Aa
What is wrong with me?????
I keep seeing the same things over and over, All of you with these aggravating neuro symptoms, doctors who don't listen and difficult to interpret lab results. I am at my witts end. I really feel like crawling into a hole. I'm 31 years old and just had a baby in early May. In the last rimester of my pregnancy I lost sensation In my left thigh from my knee to my hip. There was an "indolent appearing" lesion seen on my femur in an MRI. The doctor suggested that my baby was sitting in my sciatic nerve and that after delivery it should resolve. Two days after I had my son I randomnly had tunnel vision/ double vision and was unable to focus on anything in my direct line of vision. This occured off and on for two days. I went to my post partum appt and told my doctor that I had not regained feeling in my leg. I didn't mention the vision issue because at the time i didn't think is was relevant. At this time my doctor stated that she felt I had slipped discs that were causing the numbness and ordered an MRI. These are the results:
T11-T12- Moderate disc desication and loss of disc sace height. There is a very small central disc protrusion which mildly effaces the ventral CSF containing spaces but doesn't contact the cord. No neuroforaminal narrowing.T12-L1- Mild facet joint degenerative change with no significant stenosis.L4-L5- Very small broad based disc buldge and moderate facet joint degenerative change results in minimal bilateral neuroforaminal narrowing with no significant stenosis.L5-S1- Broad based disc protrusion and moderate facet joint degenerative change which results in moderate spinal canal stenosis. Both traversing S-1 nerve roots may be minimally contacted. The exiting nerve roots do not appear affected. Impression: 1. Additional images of the lower thoracic spine were obtained by the MRI technologist revealing a moderate sized disc protrusion at T7-T8 which does not appear to contact the cord. In addition there is ovoid T2 signal abnormality within the T-10 vertebral body which likely represents an incidentally noted vertebral body hemangioma. Given these findings, dedicate a non-contrast MRI of the T-spine 2. There is a linear region of fat signal within the posterior aspect of the spinal canal extending from approximately the L2 level distally to the sacrum consistent with an incidentally noted fatty filum terminale.
I went to the spine surgeon after these results. By then, my symptoms had progressed to waves of tingling, burning pins and needles down the leg that is numb as well as things crawling on my extremities. It started in my numb leg, then moved to my other, then a few random times in my upper extremities. The surgeon asked my symptoms,then told me, " Your back is not your problem, I believe you have MS". He wanted an MRI of my brain which he felt would show lesions. My symptoms spread with intensity to all extremities,head and my face. After the MRI of my brain, I went back to my primary, he said in his opinion, it was MS. He asked my history and the year prior, I was in Iraq. I received vaccines, including anthrax and small pox. Later, I developed severe fatigue, painful musculoskeletal issues and probably some minor depression. I thought it was the environment I was in and being away from family. A month after returning from Iraq, my husband and I conceived our 3rd child. Almost immediately my fatigue and muscle pain dissapeared, which I thought was because I was finally out of hell... Anyhow, these are the results of my brain MRI:
Technique: Mulitplanar T1 and T2, gradient echo, FLAIR and diffusion weighted images, with ADC map, are obtained. Postcontrast T1 fat saturation images are also reviewed.
Findings: Several scattered tiny T2 FLAIR bright leasions are seen throughout the subcortical white matter. These are most notable in the posterior left frontal lobe towards the vertex with a seperate more lateral left parietal lobe subcortical lesion, best seen on coronal image #18. These largest lesions measure 4mm or less in greatest dimesnion. No associated enhancement or restricted diffusion. Most of these lesions are too small to be visible on the T2 weighted images. Location and shape of these lesion are atypical for demyelenating process. There are no periventricular deep white matter lesions or central lesions. Callososeptal interface is spared.
There is normal midline anatomy with normal appearance of the CSF structures with no mass lesion or mass effect. No hemorrhage suggested on the gradient echo images. There is normal parenchymal enhancement with no evidence of disruption of the blood brain barrier. Normal T2 flow voids seen on the T2 weighted images in the major intracranial vessels. Paranasal sinuses bilateral orbits are normal in appearance.
Impression: 1. Several tiny nonspecific subcortical white matter T2 and FLAIR bright lesions with no assosciated restricted diffusion or enhancement. Distribution and morphology are atypical for demyelinating process which cannot be excluded given symptomology. 2. Otherwise normal exam.
So, my primary sends me to neurology on a referral which turns out to be a 4 month wait. In the mean time, I feel like I have red ant biting all over my body, keeping me from sleeping. My cognitive function seems to be degrading greatly, I’ve been forgetting things more frequently, stumbling more over my words, saying the wrong words and getting frustrated, slurred speech, mind blanks, i'll just forget what i was trying to say and it wil ltake me a few seconds to get back on track. This is NOT normal for me, I have always been very sharp. It’s distressing to me because I’m a nurse, I’m getting to the point where I feel that I may be a danger to my patients. I ended up in the ER becuase I couldnt take the biting feeling anymore and neuro was consulted. They ordered every blood test under the sun, started me on neurontin and said that they didn’t think it was MS from the MRI. They didn't want to jump to conclusions... Lime disease negative, no lupus apparently, no syphillis, no HIV, all the routine tests seemed normal, My PMNS or PMNR was elevated at 25, but i don't know the signifigance. They did a spinal tap to check for oligoclonal banding, which I fully expected to come back positive, however, the banding came back negative, but said that no patient serum sample was provided.. So not sure if that is signifigant either. All of my other labs have come back normal. What's more frustrating is that the doctors cant seem to agree, the neuro intern came to talk to me in the hospital and said all things considered, it was probable MS, other internal med people say no.. In the mean time, I am walking around everyday feeling like i'm hungover, that's the best way I can describe it. I am always feeling dizzy, and foggy headed, fatigued, unbalanced ,uncoordinated, my brain feels like i'm in a haze, my vision is always kinda blurry, like I need to flush my eyes out or blink to moisten them, it can be hard to focus. The pins and needles are breaking through and spreading despite the 300mg of neurontin I take three times a day. It seems to be getting worse everyday, no signs of remission like everyone talks about. I'm worried that these symptoms are not going to be reversable and delaying treating whatever it is scares me. The doctors are not communicating with me and I feel they think I'm crazy. I'm even starting to think I'm crazy.. Now with the negative CSF report, I don't know what to think, on one hand it's good but on the other, where does that leave me? Honestly I am getting to the end of my rope and feeling hopeless :(. I know this is alot of info and I know that you guys hear the same story over and over on here, but I am desperate at this point and don't know what else to do. Any input or opinions would be greatly appreciated. Thankyou guys so much your time.
T11-T12- Moderate disc desication and loss of disc sace height. There is a very small central disc protrusion which mildly effaces the ventral CSF containing spaces but doesn't contact the cord. No neuroforaminal narrowing.T12-L1- Mild facet joint degenerative change with no significant stenosis.L4-L5- Very small broad based disc buldge and moderate facet joint degenerative change results in minimal bilateral neuroforaminal narrowing with no significant stenosis.L5-S1- Broad based disc protrusion and moderate facet joint degenerative change which results in moderate spinal canal stenosis. Both traversing S-1 nerve roots may be minimally contacted. The exiting nerve roots do not appear affected. Impression: 1. Additional images of the lower thoracic spine were obtained by the MRI technologist revealing a moderate sized disc protrusion at T7-T8 which does not appear to contact the cord. In addition there is ovoid T2 signal abnormality within the T-10 vertebral body which likely represents an incidentally noted vertebral body hemangioma. Given these findings, dedicate a non-contrast MRI of the T-spine 2. There is a linear region of fat signal within the posterior aspect of the spinal canal extending from approximately the L2 level distally to the sacrum consistent with an incidentally noted fatty filum terminale.
I went to the spine surgeon after these results. By then, my symptoms had progressed to waves of tingling, burning pins and needles down the leg that is numb as well as things crawling on my extremities. It started in my numb leg, then moved to my other, then a few random times in my upper extremities. The surgeon asked my symptoms,then told me, " Your back is not your problem, I believe you have MS". He wanted an MRI of my brain which he felt would show lesions. My symptoms spread with intensity to all extremities,head and my face. After the MRI of my brain, I went back to my primary, he said in his opinion, it was MS. He asked my history and the year prior, I was in Iraq. I received vaccines, including anthrax and small pox. Later, I developed severe fatigue, painful musculoskeletal issues and probably some minor depression. I thought it was the environment I was in and being away from family. A month after returning from Iraq, my husband and I conceived our 3rd child. Almost immediately my fatigue and muscle pain dissapeared, which I thought was because I was finally out of hell... Anyhow, these are the results of my brain MRI:
Technique: Mulitplanar T1 and T2, gradient echo, FLAIR and diffusion weighted images, with ADC map, are obtained. Postcontrast T1 fat saturation images are also reviewed.
Findings: Several scattered tiny T2 FLAIR bright leasions are seen throughout the subcortical white matter. These are most notable in the posterior left frontal lobe towards the vertex with a seperate more lateral left parietal lobe subcortical lesion, best seen on coronal image #18. These largest lesions measure 4mm or less in greatest dimesnion. No associated enhancement or restricted diffusion. Most of these lesions are too small to be visible on the T2 weighted images. Location and shape of these lesion are atypical for demyelenating process. There are no periventricular deep white matter lesions or central lesions. Callososeptal interface is spared.
There is normal midline anatomy with normal appearance of the CSF structures with no mass lesion or mass effect. No hemorrhage suggested on the gradient echo images. There is normal parenchymal enhancement with no evidence of disruption of the blood brain barrier. Normal T2 flow voids seen on the T2 weighted images in the major intracranial vessels. Paranasal sinuses bilateral orbits are normal in appearance.
Impression: 1. Several tiny nonspecific subcortical white matter T2 and FLAIR bright lesions with no assosciated restricted diffusion or enhancement. Distribution and morphology are atypical for demyelinating process which cannot be excluded given symptomology. 2. Otherwise normal exam.
So, my primary sends me to neurology on a referral which turns out to be a 4 month wait. In the mean time, I feel like I have red ant biting all over my body, keeping me from sleeping. My cognitive function seems to be degrading greatly, I’ve been forgetting things more frequently, stumbling more over my words, saying the wrong words and getting frustrated, slurred speech, mind blanks, i'll just forget what i was trying to say and it wil ltake me a few seconds to get back on track. This is NOT normal for me, I have always been very sharp. It’s distressing to me because I’m a nurse, I’m getting to the point where I feel that I may be a danger to my patients. I ended up in the ER becuase I couldnt take the biting feeling anymore and neuro was consulted. They ordered every blood test under the sun, started me on neurontin and said that they didn’t think it was MS from the MRI. They didn't want to jump to conclusions... Lime disease negative, no lupus apparently, no syphillis, no HIV, all the routine tests seemed normal, My PMNS or PMNR was elevated at 25, but i don't know the signifigance. They did a spinal tap to check for oligoclonal banding, which I fully expected to come back positive, however, the banding came back negative, but said that no patient serum sample was provided.. So not sure if that is signifigant either. All of my other labs have come back normal. What's more frustrating is that the doctors cant seem to agree, the neuro intern came to talk to me in the hospital and said all things considered, it was probable MS, other internal med people say no.. In the mean time, I am walking around everyday feeling like i'm hungover, that's the best way I can describe it. I am always feeling dizzy, and foggy headed, fatigued, unbalanced ,uncoordinated, my brain feels like i'm in a haze, my vision is always kinda blurry, like I need to flush my eyes out or blink to moisten them, it can be hard to focus. The pins and needles are breaking through and spreading despite the 300mg of neurontin I take three times a day. It seems to be getting worse everyday, no signs of remission like everyone talks about. I'm worried that these symptoms are not going to be reversable and delaying treating whatever it is scares me. The doctors are not communicating with me and I feel they think I'm crazy. I'm even starting to think I'm crazy.. Now with the negative CSF report, I don't know what to think, on one hand it's good but on the other, where does that leave me? Honestly I am getting to the end of my rope and feeling hopeless :(. I know this is alot of info and I know that you guys hear the same story over and over on here, but I am desperate at this point and don't know what else to do. Any input or opinions would be greatly appreciated. Thankyou guys so much your time.
Hi again. I just responded to your other post that has this information. It's a good idea to start a new thread - lots of people won't read one that is getting long or is older.
to repeat my suggestion -
labtestsonline.org
can explain all those tests and the ranges.
to repeat my suggestion -
labtestsonline.org
can explain all those tests and the ranges.
Hello guys :)
So far, no change in my symptoms, except the hungover feeling is worse on some days than others. I have my C-spine MRI tomorrow, I'm hoping that will help us out with some answers.. Wouldn't that be great if it was just a little spinal cord compression due to some stenosis in the c-spine??
I got some lab results back today and I'm not really sure what to make of them, again, it's one of those things that could mean a lot of different things :/
Path CBC: reactiv-appearing WBC's, otherwise normal appearing smear. Clinical correlation is advised. The doc ordered this test because she said she was concerned that my WBC's had been consistently elevated for an extended period of time and was wondering why no one caught it.
ANA screen: Positive
Interpretaions: If ana is positive, but negative for all listed antibodies, then it is positive for one of 118 non-specific autoimmune anitbodies
These values are listed above the ANA results, but say a specific test-
CK- 122
CK-MB- 2.2
relative index- 1.8
These values are listed after the ANA screen:
DNA DS AB- 4
HISTONE AB- 12
ANTI-SMITH- 7
SSA AB- 246
ANTI-RNP- 21
SSB AB- 10
CENTROMERE AB- 21
JO-1 ENA- 26
SCL-70 ENA- 126
They didn't include any reference ranges for the above results, so I am just waiting now to go back to the doctor next week to go over everything.
I'm thinking the SSA AB is whats abnormal and maybe the SCL-70 ENA slightly as I think anything greater than 120 IU/ML is considered positive, but i'm not definate.
I also found out this weekend that my paternal grandmother was diagnosed with lupus several years ago and is bed ridden at this point with severe pain and paralysis. I don't have a close relationship with my biological father, but I finally broke down and called him to see if I missed somthing in the family history..
I have researched lupus, but I don't have any of the dermatological issues that are usually present. no rash, no photosensitivity, definite heat intolerance but thats all. I will do the c-spine tommorrow, and I am seeing the eye doc next week to look into the visual disturbances I've had. I am hoping that the new doc that ordered these tests will have some good news for me. She is in internal medicine, but the doctor that is over seeing her residency is a rheumotologist, so at least I will have a few more bases covered.
Any input on my labs would be greatly appreciated. I am getting really rundown, I have stopped taking my neurontin because it makes me soo much slower and scatter brained than I am already, It has even hurt my ability to have normal conversations. I think I am going to go back on and only take it bedtime though, because the pain is getting unbearable again.
I go home to Florida next weekend and I'm soo excited!! I can't wait to see my family, my home and grass and trees again!! lol, Any suggestions on somthing I can take to help with the neuralgia that wont keep me on the couch the whole time?
Thanks for all your help guys!! :)
So far, no change in my symptoms, except the hungover feeling is worse on some days than others. I have my C-spine MRI tomorrow, I'm hoping that will help us out with some answers.. Wouldn't that be great if it was just a little spinal cord compression due to some stenosis in the c-spine??
I got some lab results back today and I'm not really sure what to make of them, again, it's one of those things that could mean a lot of different things :/
Path CBC: reactiv-appearing WBC's, otherwise normal appearing smear. Clinical correlation is advised. The doc ordered this test because she said she was concerned that my WBC's had been consistently elevated for an extended period of time and was wondering why no one caught it.
ANA screen: Positive
Interpretaions: If ana is positive, but negative for all listed antibodies, then it is positive for one of 118 non-specific autoimmune anitbodies
These values are listed above the ANA results, but say a specific test-
CK- 122
CK-MB- 2.2
relative index- 1.8
These values are listed after the ANA screen:
DNA DS AB- 4
HISTONE AB- 12
ANTI-SMITH- 7
SSA AB- 246
ANTI-RNP- 21
SSB AB- 10
CENTROMERE AB- 21
JO-1 ENA- 26
SCL-70 ENA- 126
They didn't include any reference ranges for the above results, so I am just waiting now to go back to the doctor next week to go over everything.
I'm thinking the SSA AB is whats abnormal and maybe the SCL-70 ENA slightly as I think anything greater than 120 IU/ML is considered positive, but i'm not definate.
I also found out this weekend that my paternal grandmother was diagnosed with lupus several years ago and is bed ridden at this point with severe pain and paralysis. I don't have a close relationship with my biological father, but I finally broke down and called him to see if I missed somthing in the family history..
I have researched lupus, but I don't have any of the dermatological issues that are usually present. no rash, no photosensitivity, definite heat intolerance but thats all. I will do the c-spine tommorrow, and I am seeing the eye doc next week to look into the visual disturbances I've had. I am hoping that the new doc that ordered these tests will have some good news for me. She is in internal medicine, but the doctor that is over seeing her residency is a rheumotologist, so at least I will have a few more bases covered.
Any input on my labs would be greatly appreciated. I am getting really rundown, I have stopped taking my neurontin because it makes me soo much slower and scatter brained than I am already, It has even hurt my ability to have normal conversations. I think I am going to go back on and only take it bedtime though, because the pain is getting unbearable again.
I go home to Florida next weekend and I'm soo excited!! I can't wait to see my family, my home and grass and trees again!! lol, Any suggestions on somthing I can take to help with the neuralgia that wont keep me on the couch the whole time?
Thanks for all your help guys!! :)
I have decided not to go through the CSF testing again, at least not here. I was under the impression that the serum taken could possibly show a breach of the BBB even before the CSF fluid might, especially in the early stages, before lesions become definate MS lesions.. Either way, like you said, I'm not going to worry about it right now. Thanks for the input!! :)
I've reread all of this and something jumped out this time that I didn't catch before - right now there should be no need for another LP if the lab did the test correctly the first time.
You say that there was no banding in the CSF sample, right? The logical thought then would be that you can't differentiate between 0 bands and what every might be in your blood. If I understand it correctly, there should not be o-bands in your blood serum either. Zero bands in your CSF should mean that the blood brain barrier has not been breached.
For now I would stop thinking so hard about the blown LP and worrying about another one right away. Remember 10% or so of all people with MS have no bands in their CSF and it is not a diagnositic tool . The lp results are just used to support the clinical and MRI findings. There is a growing number of neurologists who don't do the LP at all.
good luck with the FL doctor - I'll be curious to hear how that goes.
I hope this puts your mind at ease, L
Good job!
Couple coincidences for you and I. I also, did not have a perfect tap, blood was drawn during LP, and afterward, not w/in 24 hrs though for the 2nd. They had an internal problem where they were caping the samples incorrectly - so basically the sample @ time of LP was lost.
Do you know if the lab still has your csf?
No funny drunk when chin down, but definitely drunk w/out chin down. Felt that way in addition to other problems for months. Had buzzing in middle of butt when down, gone when up. It did subside and I get it from time-to-time now. Neuro said it's from the lesion in my spine.
Yup - you nailed it with your interp/indications of the tap results :)
-Shell
Couple coincidences for you and I. I also, did not have a perfect tap, blood was drawn during LP, and afterward, not w/in 24 hrs though for the 2nd. They had an internal problem where they were caping the samples incorrectly - so basically the sample @ time of LP was lost.
Do you know if the lab still has your csf?
No funny drunk when chin down, but definitely drunk w/out chin down. Felt that way in addition to other problems for months. Had buzzing in middle of butt when down, gone when up. It did subside and I get it from time-to-time now. Neuro said it's from the lesion in my spine.
Yup - you nailed it with your interp/indications of the tap results :)
-Shell
Kari-
You go girl! You are really going after this. Good for you.
I had the l'hermittes sign as well but it went away. From what little I know about it has something to do with some damage to the spinal cord, it's very disorienting!
My lesions were found in my c-spine by the way. That's the only area that wasn't imaged on you right?
Honestly had I paid attention years ago and done a bit a research I would have asked for a spinal MRI, including the c-spine. When I finally got a neuro who knew what he was doing he was flabbergasted that w all the MRI's ordered over the years combined w my sx never prompted any dr to order one.
I know you want to know if all your sx are reversible but the truth is no one knows. You may not even have MS.
I can tell you that your body has an amazing ability to heal itself and that anything is possible. Don't give up hope that you can work your way back from this.
As tired and worn out as you must be b/c of this and just getting through the day, take time to take care of yourself. The best advice I rec'd from people outside this forum was from two women who have been living with MS for decades and are doing amazingly well.
Both told me that I had to think postive and believe that everything I was doing was helping. This included taking good care of myself...exercising, getting sleep, reducing stress, eating well. When I asked about how they dealt with the stress of not knowing what my future held they said, I had to let that go (yeah easier said than done but doable with time).
When I complained about the l'hermittes sign they said to stop moving my chin/head down. "Don't allow your body to get use to the sensation." Well I didn't look down for over a month, then one day when I did look down, it wasn't there anymore.
I don't know what the future has in store for you Kari, but I do know from everything that you have written that you are one strong woman and you have the smarts and resources to get the help you need. And that's big.
I know you are scared. In truth though none of us know what the future holds, MS or not. So take it one day at a time, one step at a time and little by little you will create your own future. You are already on your way and doing things this week that you didn't even imagine you would be doing last week.
We are here, listening and wanting to support you however we can. Keep writing and sharing with us. We are all cheering for you, can you hear us?
Julie
You go girl! You are really going after this. Good for you.
I had the l'hermittes sign as well but it went away. From what little I know about it has something to do with some damage to the spinal cord, it's very disorienting!
My lesions were found in my c-spine by the way. That's the only area that wasn't imaged on you right?
Honestly had I paid attention years ago and done a bit a research I would have asked for a spinal MRI, including the c-spine. When I finally got a neuro who knew what he was doing he was flabbergasted that w all the MRI's ordered over the years combined w my sx never prompted any dr to order one.
I know you want to know if all your sx are reversible but the truth is no one knows. You may not even have MS.
I can tell you that your body has an amazing ability to heal itself and that anything is possible. Don't give up hope that you can work your way back from this.
As tired and worn out as you must be b/c of this and just getting through the day, take time to take care of yourself. The best advice I rec'd from people outside this forum was from two women who have been living with MS for decades and are doing amazingly well.
Both told me that I had to think postive and believe that everything I was doing was helping. This included taking good care of myself...exercising, getting sleep, reducing stress, eating well. When I asked about how they dealt with the stress of not knowing what my future held they said, I had to let that go (yeah easier said than done but doable with time).
When I complained about the l'hermittes sign they said to stop moving my chin/head down. "Don't allow your body to get use to the sensation." Well I didn't look down for over a month, then one day when I did look down, it wasn't there anymore.
I don't know what the future has in store for you Kari, but I do know from everything that you have written that you are one strong woman and you have the smarts and resources to get the help you need. And that's big.
I know you are scared. In truth though none of us know what the future holds, MS or not. So take it one day at a time, one step at a time and little by little you will create your own future. You are already on your way and doing things this week that you didn't even imagine you would be doing last week.
We are here, listening and wanting to support you however we can. Keep writing and sharing with us. We are all cheering for you, can you hear us?
Julie
Yes I had all of the classic symptoms that you have except for the pregnancy part :)
But before I get into my history with the VA I will try to clarify about the LP testing. You can have banding in both the serum and CFS. It is the comparison of the banding in each of them that gives you a positive for MS.
I am a Navy vet and spent about 9 months off the coast of Vietnam on a Guided Missile Destroyer. While deployed I think I might have been exposed to Agent Orange but since I was a blue water sailor the VA denies exposure.
I have had MS symptoms since 1987 and went on SSDI in 1989. I didn't start going to the VA until 2009. Prior to going to the VA I have been DX'ed with depression ( that doctor want me to have electro shock therapy ), CFIDS, Fibromyalgia, Sjogren's syndrome, and Peripheral Neuropathy. Only the Sjogren's syndrome was true as I have both that and MS.
At first my VA neuro was just saying that I didn't have MS, but luckily my Shrink got me sent to the Vanderbilt University MS clinic which forced the VA Neuro to take a closer look at me. After that it was probable MS as they could not see any typical MS lesions in my brain. Of course the1.5 T MRI at the VA hospital is so old and out of date the images are no better than an open bore MRI.
The Vanderbilt Neuro got then to let the do a MRI of my spine on the Vanderbilt 3T which showed the narrowing of my spinal cord which got the VA to continue sending there for treatment as this VA hospital doesn't have any MS specialists..
One thing that has hindered my getting a DX besides the Sjogren's was I always seemed to have appointment with the VA neuro on my good day so they were not seeing some of the obvious MS symptoms. The around the beginning of this year I actually had an appointment with them on a bad day and they saw a lot of the symptom which could only be caused by lesions in my brain. It was at this point that they set up the Neuro Psych testing which showed that my problems were definitely MS related and I got my DX of SPMS.
Having my treating Neuro outside of the VA does present some problems in that if I have a flare of symptom I can't just go see him. It has to be set up by the VA fee-based office which can take weeks to get through. And then only if it mets their guide lines for seeing him. Even when my VA Neuro put in for a fee-based consult to my outside Neuro they would not approve it because it had been less than 6 months. The VA is a bureaucracy run like an HMO that can over rule your doctors on just about anything.
I had considered seeing my Vanderbilt Neuro using my Medicare but then found out that unless an appointment was an approved fee-based appointment the VA would not honor any RX by the doctor.
If you have any questions just give me a shout. I don't come on the forum much any more as it is too hard on my vision so a PM will let me know if you need a question answered by me. There is also one other Vet on here that can also answer some of your questions but I have not seen him around much lately.
Dennis
But before I get into my history with the VA I will try to clarify about the LP testing. You can have banding in both the serum and CFS. It is the comparison of the banding in each of them that gives you a positive for MS.
I am a Navy vet and spent about 9 months off the coast of Vietnam on a Guided Missile Destroyer. While deployed I think I might have been exposed to Agent Orange but since I was a blue water sailor the VA denies exposure.
I have had MS symptoms since 1987 and went on SSDI in 1989. I didn't start going to the VA until 2009. Prior to going to the VA I have been DX'ed with depression ( that doctor want me to have electro shock therapy ), CFIDS, Fibromyalgia, Sjogren's syndrome, and Peripheral Neuropathy. Only the Sjogren's syndrome was true as I have both that and MS.
At first my VA neuro was just saying that I didn't have MS, but luckily my Shrink got me sent to the Vanderbilt University MS clinic which forced the VA Neuro to take a closer look at me. After that it was probable MS as they could not see any typical MS lesions in my brain. Of course the1.5 T MRI at the VA hospital is so old and out of date the images are no better than an open bore MRI.
The Vanderbilt Neuro got then to let the do a MRI of my spine on the Vanderbilt 3T which showed the narrowing of my spinal cord which got the VA to continue sending there for treatment as this VA hospital doesn't have any MS specialists..
One thing that has hindered my getting a DX besides the Sjogren's was I always seemed to have appointment with the VA neuro on my good day so they were not seeing some of the obvious MS symptoms. The around the beginning of this year I actually had an appointment with them on a bad day and they saw a lot of the symptom which could only be caused by lesions in my brain. It was at this point that they set up the Neuro Psych testing which showed that my problems were definitely MS related and I got my DX of SPMS.
Having my treating Neuro outside of the VA does present some problems in that if I have a flare of symptom I can't just go see him. It has to be set up by the VA fee-based office which can take weeks to get through. And then only if it mets their guide lines for seeing him. Even when my VA Neuro put in for a fee-based consult to my outside Neuro they would not approve it because it had been less than 6 months. The VA is a bureaucracy run like an HMO that can over rule your doctors on just about anything.
I had considered seeing my Vanderbilt Neuro using my Medicare but then found out that unless an appointment was an approved fee-based appointment the VA would not honor any RX by the doctor.
If you have any questions just give me a shout. I don't come on the forum much any more as it is too hard on my vision so a PM will let me know if you need a question answered by me. There is also one other Vet on here that can also answer some of your questions but I have not seen him around much lately.
Dennis
I'm sorry to hear about your diagnosis, but I'm sure that you are happy to have answer just the same.
Just curious, where you having the classic symptoms that I have had? What did the VA docs tell you it was? How long did you have symptoms before getting this diagnosis? Have you deployed?
Sorry for all the questions, but I could definately use the input from someone who has battled the same system.
- Kari
Just curious, where you having the classic symptoms that I have had? What did the VA docs tell you it was? How long did you have symptoms before getting this diagnosis? Have you deployed?
Sorry for all the questions, but I could definately use the input from someone who has battled the same system.
- Kari
lulu-
No need to go to the mat on that one, you were def. right. I called the lab that did the test today and confirmed. If I want accurate results for this test, I have to have another LP, the serum sample must be drawn within 24 hours of the CSF... So no o-band test for me at the moment...
Yea, I thought this guy was a quack, I guess it is best to always trust your gut.. Thanks for the info :)
No need to go to the mat on that one, you were def. right. I called the lab that did the test today and confirmed. If I want accurate results for this test, I have to have another LP, the serum sample must be drawn within 24 hours of the CSF... So no o-band test for me at the moment...
Yea, I thought this guy was a quack, I guess it is best to always trust your gut.. Thanks for the info :)
Hi shell-
Yes, mission complete.. I spoke with quest diagnostics in california where they sent the sample. They told me that it is required to send a serum sample taken within 24 hours of CSF collection, otherwise the samples are useless. So, for me, that means another tap... I will not be doing that again here. I will wait till I get to my new station.
I also filed a formal complaint today with the hospitals patient advocacy department. It was hard considering that I work with these people, but if I can save someone else from going through this, then so be it..They told me that they are very happy I cam forward and want me to decide on a resolution this weekend?? I say I want a doc that will help me and look at all pieces of the puzzle. They also asked me to sit down with the department heads and tell them my story.. I'm not sure if I'll do that one..
So if they find banding in my serum then it will indicate something other than MS? if it it MS then you should see banding only in the CSF except for the 5-10% that don't show banding??
You have that weird buzzing when you tilt your chin too? did it also make you feel foggy or very just drunk in the head? then go away when you lifted your head up?
I stopped taking the neurontin today. The burning and pins and needles are getting very intense very quick, but i have to see if i can get some intelligence and mental alertness back.. i am really afraid to miss something important in one of my patients.. I looked into the ametrypteline and I guess int's an anti-depressant. Not sure how i feel about that, but I guess at this point if it can replace the neurontin, I will give it a shot.
I am going home to florida at the end of october to see my family. My dad has made me an appointment with a neurologist, he is going to pay out of his pocket for it , so I can get another opinion. The doc said for me to bring every MRI and lab result they have done. I am hoping that this will yield some results, so i dont have to wait untill i move to get some help.
Just curious how you got the l'hermittes sign to improve or did it just sort of go into remission? I love to read and either need to find a stand to hold my book up or i'm going to lose my arms.. lol
- Kari
Yes, mission complete.. I spoke with quest diagnostics in california where they sent the sample. They told me that it is required to send a serum sample taken within 24 hours of CSF collection, otherwise the samples are useless. So, for me, that means another tap... I will not be doing that again here. I will wait till I get to my new station.
I also filed a formal complaint today with the hospitals patient advocacy department. It was hard considering that I work with these people, but if I can save someone else from going through this, then so be it..They told me that they are very happy I cam forward and want me to decide on a resolution this weekend?? I say I want a doc that will help me and look at all pieces of the puzzle. They also asked me to sit down with the department heads and tell them my story.. I'm not sure if I'll do that one..
So if they find banding in my serum then it will indicate something other than MS? if it it MS then you should see banding only in the CSF except for the 5-10% that don't show banding??
You have that weird buzzing when you tilt your chin too? did it also make you feel foggy or very just drunk in the head? then go away when you lifted your head up?
I stopped taking the neurontin today. The burning and pins and needles are getting very intense very quick, but i have to see if i can get some intelligence and mental alertness back.. i am really afraid to miss something important in one of my patients.. I looked into the ametrypteline and I guess int's an anti-depressant. Not sure how i feel about that, but I guess at this point if it can replace the neurontin, I will give it a shot.
I am going home to florida at the end of october to see my family. My dad has made me an appointment with a neurologist, he is going to pay out of his pocket for it , so I can get another opinion. The doc said for me to bring every MRI and lab result they have done. I am hoping that this will yield some results, so i dont have to wait untill i move to get some help.
Just curious how you got the l'hermittes sign to improve or did it just sort of go into remission? I love to read and either need to find a stand to hold my book up or i'm going to lose my arms.. lol
- Kari
p.s. That buzzing when you chin to chest sounds like l'hermittes sign to me. If so, it can improve, it's not painful. MS is not the only cause of this - but it was for me.
-shell
-shell
Kari - YOur very welcome.
Did you complete your mission? haha
The one where you are calling the docs office to have you go back to the facility for a blood draw?
Like I said, while not perfect tap (because blood not drawn at time of tap), it's still "something" to compare. However, since you have no banding in your CSF - This is important - if they find banding in your blood serum - at that point they will know that the CNS is not the originator. Does this make sense?
Please hollar if not - it's important - call that doc office.
-Shell
Did you complete your mission? haha
The one where you are calling the docs office to have you go back to the facility for a blood draw?
Like I said, while not perfect tap (because blood not drawn at time of tap), it's still "something" to compare. However, since you have no banding in your CSF - This is important - if they find banding in your blood serum - at that point they will know that the CNS is not the originator. Does this make sense?
Please hollar if not - it's important - call that doc office.
-Shell
I hope that you will be able to get this figured out soon.
I just got my DX of MS this year after the VA sent me to an MS specialist outside of the VA. With my MRI of brain I still don't have any typical lesions and the only thing they found in my C-spine was a 50% narrowing of the cord. I suspect the narrowing is really a black hole from a former lesion. I also had a negative LP. One of the things that got my DX was having a neuro Psych test done. That took 5 hours but was very much worth the time and effort.
Dennis
I just got my DX of MS this year after the VA sent me to an MS specialist outside of the VA. With my MRI of brain I still don't have any typical lesions and the only thing they found in my C-spine was a 50% narrowing of the cord. I suspect the narrowing is really a black hole from a former lesion. I also had a negative LP. One of the things that got my DX was having a neuro Psych test done. That took 5 hours but was very much worth the time and effort.
Dennis
I don't understand why your doctor is saying this, either.
If the doctor is testing the CSF for something other than MS like a virus or bacteria, then maybe the serum is not needed. If they are looking for MS evidence, then it absolutely is needed.
I will go to the mat on the fact that you must have a blood sample taken within a few hours of the CSF taken from the LP to look for o-bands. Everyone can have them in the CSF - it is the number of o-bands in the CSF that aren't in the blood sample that help to determine supporting evidence for MS. This doctor is totally wrong and that's something I don't venture out and say often.
Good luck with seeing a specialist -obviously you will do better there.
If the doctor is testing the CSF for something other than MS like a virus or bacteria, then maybe the serum is not needed. If they are looking for MS evidence, then it absolutely is needed.
I will go to the mat on the fact that you must have a blood sample taken within a few hours of the CSF taken from the LP to look for o-bands. Everyone can have them in the CSF - it is the number of o-bands in the CSF that aren't in the blood sample that help to determine supporting evidence for MS. This doctor is totally wrong and that's something I don't venture out and say often.
Good luck with seeing a specialist -obviously you will do better there.
Thanks for the link. That was very concise and easy to understand. That being said, I don't understand why my doctors are telling the serum is not important ??
Shelly-
Thank you soo much for your support and respect. I can assure you that it really means a lot to us.
I understand what you mean about not jumping to conclusions. I would much rather find out for sure what is happening instead of slapping a label on quickly and missing something that is much more serious in the long run. It's just frustrating when you know that there is something wrong with your body and it you can't fix it. I'm sure you can relate to that though!! :0
As for the neurontin, it helped at first, it definately toned down the intensity of the bit. However, within a few days, I started to have break through of the pins and needles. My neuro uped the dose to 300mg three times a day, which hasn't made a difference at all. I didn't realize the neurontin knocked you for a loop like that, I have really been getting slow mentally and just out of it. It was like that a little before the meds, but it has gotten much worse. I'm hoping that it is just the medication, I really thought I was losing my mind here.. lol
I saw my ortho doc today for a follow up appt. and he told me about neurontin puttin you in a stupor, and prescribed ametrypteline for me. I havn't researched it yet, but he seems to think it will help me alot. Do you know anything about the med?
The pregnancy issue is what really makes me feel that it is MS, considering the very sudden onset of symptoms after delivery. Losing my vision two days after birth, i thought it was just my blood pressure. I have tried to research the MS mimics to see about pregnancy relieving symptoms, I havn't had any luck with that.
As for the LP, i still can't get an answer as to wether the results are accurate or not without the serum sample. I am pretty upset about that because I had a rough time with the spinal headache for about 6 days after, and the blood patch was no fun at all. They did the LP on the 15th of september, and the results came back on the 27th of september. my neuro doc told me if i was concerned that the results were not correct, to call quest directly and find out their protocol. That will be my mission tommorrow. I really hope that they still have a csf smaple and can just take the serum. I relly dont want to go through that again, but I know how important it is.
On the bright side, I got tough with my neuro doc today and told him I didn't feel comfortable with the wait and see approach and that I didn't want to go another 45 days feeling like im drunk everyday. He said that he wanted me to see internal medicine and that he was referring me to a MS specialist. I have an appt on monday afternoon with internal medicine and I'm hoping she will look at all the pieces of the puzzle instead of just a portion. Another opinion never hurts.
I really appreciate the input and support, I have been very overwhelmed with all this, it's hard trying to juggle soo much and keep your composure together at the same time. Having somebody that's been there help guide you through this maze is a god send. Thank you for that!! :)
Take care and I will be updating soon- Kari
Thank you soo much for your support and respect. I can assure you that it really means a lot to us.
I understand what you mean about not jumping to conclusions. I would much rather find out for sure what is happening instead of slapping a label on quickly and missing something that is much more serious in the long run. It's just frustrating when you know that there is something wrong with your body and it you can't fix it. I'm sure you can relate to that though!! :0
As for the neurontin, it helped at first, it definately toned down the intensity of the bit. However, within a few days, I started to have break through of the pins and needles. My neuro uped the dose to 300mg three times a day, which hasn't made a difference at all. I didn't realize the neurontin knocked you for a loop like that, I have really been getting slow mentally and just out of it. It was like that a little before the meds, but it has gotten much worse. I'm hoping that it is just the medication, I really thought I was losing my mind here.. lol
I saw my ortho doc today for a follow up appt. and he told me about neurontin puttin you in a stupor, and prescribed ametrypteline for me. I havn't researched it yet, but he seems to think it will help me alot. Do you know anything about the med?
The pregnancy issue is what really makes me feel that it is MS, considering the very sudden onset of symptoms after delivery. Losing my vision two days after birth, i thought it was just my blood pressure. I have tried to research the MS mimics to see about pregnancy relieving symptoms, I havn't had any luck with that.
As for the LP, i still can't get an answer as to wether the results are accurate or not without the serum sample. I am pretty upset about that because I had a rough time with the spinal headache for about 6 days after, and the blood patch was no fun at all. They did the LP on the 15th of september, and the results came back on the 27th of september. my neuro doc told me if i was concerned that the results were not correct, to call quest directly and find out their protocol. That will be my mission tommorrow. I really hope that they still have a csf smaple and can just take the serum. I relly dont want to go through that again, but I know how important it is.
On the bright side, I got tough with my neuro doc today and told him I didn't feel comfortable with the wait and see approach and that I didn't want to go another 45 days feeling like im drunk everyday. He said that he wanted me to see internal medicine and that he was referring me to a MS specialist. I have an appt on monday afternoon with internal medicine and I'm hoping she will look at all the pieces of the puzzle instead of just a portion. Another opinion never hurts.
I really appreciate the input and support, I have been very overwhelmed with all this, it's hard trying to juggle soo much and keep your composure together at the same time. Having somebody that's been there help guide you through this maze is a god send. Thank you for that!! :)
Take care and I will be updating soon- Kari
Hello Karen and thank you for your input!! :)
I have done quite a bit of lifting, and jumping and crawling in my army career.. lol, so I wasn't too suprised about the state of my spine. I was a little concerned about the hemangioma, but i was born with one on my face and head, and the spine surgeon said it was an incidental finding. what did they say about you lesion? did they mistake it for a hemangioma to begin with?
I will def. keep an eye on it though. I am going to ask mu neuro to get a c-spine, I am starting to notice that when i tilt my head down, like to read a book, i sometimes get a stronger buzzing sensation and my overall symptoms seem to get worse..
I had a follow up with ortho today, which was what started this whole mess.. The ortho doc took pitty on me and said he was ordering ametrypteline for me to help with the pins and needles. He said he would find a justification to order it for me.. lol, I am going to try that out next. The gabopentin helped, but it is slowly becoming less effective, and is making my confusion and fogginess feel worse.
We do have an immunologist at the hospital, that is a great idea!! I remember getting sick, having a very bad headache and throwing up the night of the first anthrax vaccine and small pox injection. It may be difficult for me at this point to address that issue because the army is still very hush, hush about the anthrax controversy.
As for an advocate, my chain of command are being very helpful and supportive. They have even called favors from doctors they have worked with previously. Thats how i finally got the blood patch.. lol. at the end of the day though, we all have to go through the same system.
The neuro i am seeing now is a bit of a quack to me, he reminds me of john malkovich... i dont have much confidence in him and he rushes through the exams.. I talked to him today about the LP and he told me no serum was necessary in his opinion and that the csf was negative for o-bands so he was satisfied. he said i should call quest diagnostics to find out wether the serum was actually required.. He did say he is sending me to an internest because of my "hung over, cloudy feeling" and a MS specialist.
My husband and I have requested an emergency transfer to maryland . We have an autistic son and he needs services that they cant provide us here. we have a a very good chance of getting it and being out of here by january. the john's hopkins center is just outside of the army postthere and we would be elegible to get our healthcare through them instead of tricare docs. I have read that they have anmazing MS center there and I think I could see the neuro/opthamologist there with no issues. They also have the best autism treatment facility in the country, so we would be very blessed. Please keep your fingers crossed for us. :)
Well thankyou so much again for your input, i will definately be putting your suggestions in action!!
-Kari
I have done quite a bit of lifting, and jumping and crawling in my army career.. lol, so I wasn't too suprised about the state of my spine. I was a little concerned about the hemangioma, but i was born with one on my face and head, and the spine surgeon said it was an incidental finding. what did they say about you lesion? did they mistake it for a hemangioma to begin with?
I will def. keep an eye on it though. I am going to ask mu neuro to get a c-spine, I am starting to notice that when i tilt my head down, like to read a book, i sometimes get a stronger buzzing sensation and my overall symptoms seem to get worse..
I had a follow up with ortho today, which was what started this whole mess.. The ortho doc took pitty on me and said he was ordering ametrypteline for me to help with the pins and needles. He said he would find a justification to order it for me.. lol, I am going to try that out next. The gabopentin helped, but it is slowly becoming less effective, and is making my confusion and fogginess feel worse.
We do have an immunologist at the hospital, that is a great idea!! I remember getting sick, having a very bad headache and throwing up the night of the first anthrax vaccine and small pox injection. It may be difficult for me at this point to address that issue because the army is still very hush, hush about the anthrax controversy.
As for an advocate, my chain of command are being very helpful and supportive. They have even called favors from doctors they have worked with previously. Thats how i finally got the blood patch.. lol. at the end of the day though, we all have to go through the same system.
The neuro i am seeing now is a bit of a quack to me, he reminds me of john malkovich... i dont have much confidence in him and he rushes through the exams.. I talked to him today about the LP and he told me no serum was necessary in his opinion and that the csf was negative for o-bands so he was satisfied. he said i should call quest diagnostics to find out wether the serum was actually required.. He did say he is sending me to an internest because of my "hung over, cloudy feeling" and a MS specialist.
My husband and I have requested an emergency transfer to maryland . We have an autistic son and he needs services that they cant provide us here. we have a a very good chance of getting it and being out of here by january. the john's hopkins center is just outside of the army postthere and we would be elegible to get our healthcare through them instead of tricare docs. I have read that they have anmazing MS center there and I think I could see the neuro/opthamologist there with no issues. They also have the best autism treatment facility in the country, so we would be very blessed. Please keep your fingers crossed for us. :)
Well thankyou so much again for your input, i will definately be putting your suggestions in action!!
-Kari
Hello Karen and thankyou for your input!! :)
I have done quite a bit of lifting, and jumping and crawling in my army career.. lol, so I wasn't too suprosed about the state of my spine. I was a little concerned about the hemangioma, but i was born with one on my face and head, and the spine surgeon said it was an incidental finding. what did they say about you lesion? did they mistake it for a hemangioma to begin with?
I will def. keep an eye on it though. I am going to ask mu neuro to get a c-spine, I am starting to notice that when i tilt my head down, like to read a book, i sometimes get a stronger buzzing sensation and my overall symptoms seem to get worse..
I had a follow up with ortho today, which was what started this whole mess.. The ortho doc took pitty on me and said he was ordering ametrypteline for me to help with the pins and needles. He said he would find a justification to order it for me.. lol, I am going to try that out next. The gabopentin helped, but it is slowly becoming less effective, and is making my confusion and fogginess feel worse.
We do have an immunologist at the hospital, that is a great idea!! I remember getting sick, having a very bad headache and throwing up the night of the first anthrax vaccine and small pox injection. It may be difficult for me at this point to address that issue because the army is still very hush, hush about the anthrax controversy.
As for an advocate, my chain of command are being very helpful and supportive. They have even called favors from doctors they have worked with previously. Thats how i finally got the blood patch.. lol. at the end of the day though, we all have to go through the same system.
The neuro i am seeing now is a bit of a quack to me, he reminds me of john malkovich... i dont have much confidence in him and he rushes through the exams.. I talked to him today about the LP and he told me no serum was necessary in his opinion and that the csf was negative for o-bands so he was satisfied. he said i should call quest diagnostics to find out wether the serum was actually required.. He did say he is sending me to an internest because of my "hung over, cloudy feeling" and a MS specialist.
My husband and I have requested an emergency transfer to maryland . We have an autistic son and he needs services that they cant provide us here. we have a a very good chance of getting it and being out of here by january. the john's hopkins center is just outside of the army postthere and we would be elegible to get our healthcare through them instead of tricare docs. I have read that they have anmazing MS center there and I think I could see the neuro/opthamologist there with no issues. They also have the best autism treatment facility in the country, so we would be very blessed. Please keep your fingers crossed for us. :)
Well thankyou so much again for your input, i will definately be putting your suggestions in action!!
-Kari
I have done quite a bit of lifting, and jumping and crawling in my army career.. lol, so I wasn't too suprosed about the state of my spine. I was a little concerned about the hemangioma, but i was born with one on my face and head, and the spine surgeon said it was an incidental finding. what did they say about you lesion? did they mistake it for a hemangioma to begin with?
I will def. keep an eye on it though. I am going to ask mu neuro to get a c-spine, I am starting to notice that when i tilt my head down, like to read a book, i sometimes get a stronger buzzing sensation and my overall symptoms seem to get worse..
I had a follow up with ortho today, which was what started this whole mess.. The ortho doc took pitty on me and said he was ordering ametrypteline for me to help with the pins and needles. He said he would find a justification to order it for me.. lol, I am going to try that out next. The gabopentin helped, but it is slowly becoming less effective, and is making my confusion and fogginess feel worse.
We do have an immunologist at the hospital, that is a great idea!! I remember getting sick, having a very bad headache and throwing up the night of the first anthrax vaccine and small pox injection. It may be difficult for me at this point to address that issue because the army is still very hush, hush about the anthrax controversy.
As for an advocate, my chain of command are being very helpful and supportive. They have even called favors from doctors they have worked with previously. Thats how i finally got the blood patch.. lol. at the end of the day though, we all have to go through the same system.
The neuro i am seeing now is a bit of a quack to me, he reminds me of john malkovich... i dont have much confidence in him and he rushes through the exams.. I talked to him today about the LP and he told me no serum was necessary in his opinion and that the csf was negative for o-bands so he was satisfied. he said i should call quest diagnostics to find out wether the serum was actually required.. He did say he is sending me to an internest because of my "hung over, cloudy feeling" and a MS specialist.
My husband and I have requested an emergency transfer to maryland . We have an autistic son and he needs services that they cant provide us here. we have a a very good chance of getting it and being out of here by january. the john's hopkins center is just outside of the army postthere and we would be elegible to get our healthcare through them instead of tricare docs. I have read that they have anmazing MS center there and I think I could see the neuro/opthamologist there with no issues. They also have the best autism treatment facility in the country, so we would be very blessed. Please keep your fingers crossed for us. :)
Well thankyou so much again for your input, i will definately be putting your suggestions in action!!
-Kari
Yikes!!!!
You've been throught the wringer :(
First off, thank you for your service! You have all of my respect - I'm a proud american, and I'm grateful for all you and your fellow servicemembers do each and every day. From the bottom of my heart, thank you.
Couple things...It's good to not jump to conclusions - I do agree with what was said there. When not typical, a serious investigation into what could be the culprit is desperately needed.
Did you get any relief from the neurontin? Or, did it just knock you for a loop? Hope it helped lessen some things for you.
It's been the experience of members here that MS symptoms went away during pregnancy. I do not know the instance of those mentions, nor do I know if this holds true of those of us who are dx'd with MS mimics. But, for what it's worth - it happens. And I've read it in articles on the net.
As for the LP - oh my. Did they screw that up or what - damn, so sorry to hear this. .... But, when did they perform the LP? And, while this suggest would not be perfect because blood serum is suppose to be drawn at the time of LP.......If I were you I would call the docs office, talk to the nurse, and tell her that you want to go back to the facility that performed your LP for a blood serum draw. Then, ask your docs office if they will additionally ask that facility if your CSF is still available. They do not dispose of CSF immediately. And, if there is any chance of comparison to the blood, you would need to know if they still had it.
Hope to help you move forward with some next steps. No matter what this ends up being, we're here for you.
Sorry to be long winded - and, Thank you again :)
~Shelly
You've been throught the wringer :(
First off, thank you for your service! You have all of my respect - I'm a proud american, and I'm grateful for all you and your fellow servicemembers do each and every day. From the bottom of my heart, thank you.
Couple things...It's good to not jump to conclusions - I do agree with what was said there. When not typical, a serious investigation into what could be the culprit is desperately needed.
Did you get any relief from the neurontin? Or, did it just knock you for a loop? Hope it helped lessen some things for you.
It's been the experience of members here that MS symptoms went away during pregnancy. I do not know the instance of those mentions, nor do I know if this holds true of those of us who are dx'd with MS mimics. But, for what it's worth - it happens. And I've read it in articles on the net.
As for the LP - oh my. Did they screw that up or what - damn, so sorry to hear this. .... But, when did they perform the LP? And, while this suggest would not be perfect because blood serum is suppose to be drawn at the time of LP.......If I were you I would call the docs office, talk to the nurse, and tell her that you want to go back to the facility that performed your LP for a blood serum draw. Then, ask your docs office if they will additionally ask that facility if your CSF is still available. They do not dispose of CSF immediately. And, if there is any chance of comparison to the blood, you would need to know if they still had it.
Hope to help you move forward with some next steps. No matter what this ends up being, we're here for you.
Sorry to be long winded - and, Thank you again :)
~Shelly
Just thought I'd add that you're NOT crazy.
No need to rush to get another LP.
You do have a significant amount of spinal issues. You must have been doing heavy lifting. I "desicated" my c-spine. Keep an eye on the "hemangioma." I had one of those that was later called a lesion - and a honker at that. When they do the dedicated T-spine imaging, see if they'll do the cervical spine too, with and without contrast.
It made me smile that you and your husband conceived a child right after your return. Glorious gift. Thanks for your service and glad you are out of that hell hole. :-)
Perhaps another medication would be more beneficial in reducing the biting sensations. Do you have a primary physician that would discuss medication options?
You are in a peculiar situation with your comrades being your health care providers. Do what you can ASAP to get out of their care.
For now, take really good care of yourself. I've got some suggestions that I will "PM" (Private Message) you with later.
As suggested by GuitarGirl - read the Health Pages:
http://www.medhelp.org/health_pages/list?cid=36
Don't worry if your symptoms subside only to return. It could be months or years before another problem arises. This will give you time to get your c-spine imaged and possibly see a rehumatologist. Does TriCare have an immunologist that would look at the possibility of an adverse reaction to one of the vaccinations? We do have a history of not treating our armed forces well and even making guinea pigs of them.
Is someone in your health care system keeping an eye out for you? Is there someone that can advocate for you if needed?
See if you can get referred to a neuro-opthamologist. It is reasonable with your symptoms and possible MS diagnosis to see one, especially since there is disagreement on the subject.
Take care.
No need to rush to get another LP.
You do have a significant amount of spinal issues. You must have been doing heavy lifting. I "desicated" my c-spine. Keep an eye on the "hemangioma." I had one of those that was later called a lesion - and a honker at that. When they do the dedicated T-spine imaging, see if they'll do the cervical spine too, with and without contrast.
It made me smile that you and your husband conceived a child right after your return. Glorious gift. Thanks for your service and glad you are out of that hell hole. :-)
Perhaps another medication would be more beneficial in reducing the biting sensations. Do you have a primary physician that would discuss medication options?
You are in a peculiar situation with your comrades being your health care providers. Do what you can ASAP to get out of their care.
For now, take really good care of yourself. I've got some suggestions that I will "PM" (Private Message) you with later.
As suggested by GuitarGirl - read the Health Pages:
http://www.medhelp.org/health_pages/list?cid=36
Don't worry if your symptoms subside only to return. It could be months or years before another problem arises. This will give you time to get your c-spine imaged and possibly see a rehumatologist. Does TriCare have an immunologist that would look at the possibility of an adverse reaction to one of the vaccinations? We do have a history of not treating our armed forces well and even making guinea pigs of them.
Is someone in your health care system keeping an eye out for you? Is there someone that can advocate for you if needed?
See if you can get referred to a neuro-opthamologist. It is reasonable with your symptoms and possible MS diagnosis to see one, especially since there is disagreement on the subject.
Take care.
Hello, and i'm sorry about the long text. I tried to space it out but there were too many characters.. Anyhow, I have heard a little on the occurence of Iraq and afghanistan vets being diagnosed with MS in increasingly large numbers, I have also heard that the anthrax vaccines they make us take are known to cause MS, lupus, certain types of cancer and various other neurological abnormalities. Sadly, you are right about the tricare system, no doctors will even broach that discussion with their patients.
I will try to find out more on the VA research. I know they have finally acknowledged the gulf war syndrome, for all the desert storm vets with the perplexing neuro issues. They havn't said wether we as IRaq/afghani vets will fall under the same.
I am still waiting to hear on the LP issue. I did call the the lab in our hospital today and one of the tech's told me that even with no serum the test says no o-bands in the csf, so the results are essentially negative. However, like you said, I have done some reading and they have to run my serum at the same time, to determine if it is an issue with the blood brain barrier. I think that the residents that did the puncture are not going to call me and own up to their mistake however, so I trying to figure out how to get this handled as professionally as possible. I do have to work with these guys everyday :(
Thank you so much for your encouragement on going through this process. sometimes I feel like just bawling out of frustration. It's hard at times to imagine going everyday feeling like this. Wondering if they'll ever figure it out. reading the diagnostic requirements can be very disheartening, and it upsets me to think that they will potentially wait untill this issue passes, and then happens again before any type of treatment is done, but I am really trying to be patient and to be thankful for how much function I do have. I realize after seeing others posts here, that I could have it much worse.
I will keep you posted on what happens with this LP issue and just one question, I was thinking that because the lesions in my brain were not typical, perhaps a cervical MRI would be good, It's the only part of my CNS that has not been imaged. I have read that there are often important clues there.. Thanks for your help.
Kari
I will try to find out more on the VA research. I know they have finally acknowledged the gulf war syndrome, for all the desert storm vets with the perplexing neuro issues. They havn't said wether we as IRaq/afghani vets will fall under the same.
I am still waiting to hear on the LP issue. I did call the the lab in our hospital today and one of the tech's told me that even with no serum the test says no o-bands in the csf, so the results are essentially negative. However, like you said, I have done some reading and they have to run my serum at the same time, to determine if it is an issue with the blood brain barrier. I think that the residents that did the puncture are not going to call me and own up to their mistake however, so I trying to figure out how to get this handled as professionally as possible. I do have to work with these guys everyday :(
Thank you so much for your encouragement on going through this process. sometimes I feel like just bawling out of frustration. It's hard at times to imagine going everyday feeling like this. Wondering if they'll ever figure it out. reading the diagnostic requirements can be very disheartening, and it upsets me to think that they will potentially wait untill this issue passes, and then happens again before any type of treatment is done, but I am really trying to be patient and to be thankful for how much function I do have. I realize after seeing others posts here, that I could have it much worse.
I will keep you posted on what happens with this LP issue and just one question, I was thinking that because the lesions in my brain were not typical, perhaps a cervical MRI would be good, It's the only part of my CNS that has not been imaged. I have read that there are often important clues there.. Thanks for your help.
Kari
hi lilmissmedic and welcome again. I tried to read your post, but had trouble with the large block of text- that's what you will see most of us write short paragraphs to keep them legible. The long posts just run into a big blur.
I find it interesting that you were in Iraq and all of this started after your return. The VA is looking into the connection of the large number of vets who have MS and have also served in hostile environments. I realize you can't push that issue while you are being seen by Tricare docs, but do keep it in mind.
I am so sorry your techs/docs blew the LP and didn't do the blood collection at the same time. That makes your CSF check for o-bands worthless. They need the serum to compare numbers of how many unique o-bands are in the csf versus your blood, indica ting a breech of the blood brain barrier.
Even nurse and doctors have a lot to learn about MS and I hope you will take some time to learn more about this MiSerable disease while you are waiting for your next appointment . I'm glad you are seeing a new doc out on the economy instead of on base. What a difference that can make to your health care.
Searching for answers of neurological disorders is not for the weak - I can tell you aren't - and it takes lots of patience. Neurological time moves about as slow as the ice ages.... it can creep, especially when you are wondering what's going on with your body.
Please come back and ask all the questions you want - this is a hard one to wait out alone.
be well, Lulu
I find it interesting that you were in Iraq and all of this started after your return. The VA is looking into the connection of the large number of vets who have MS and have also served in hostile environments. I realize you can't push that issue while you are being seen by Tricare docs, but do keep it in mind.
I am so sorry your techs/docs blew the LP and didn't do the blood collection at the same time. That makes your CSF check for o-bands worthless. They need the serum to compare numbers of how many unique o-bands are in the csf versus your blood, indica ting a breech of the blood brain barrier.
Even nurse and doctors have a lot to learn about MS and I hope you will take some time to learn more about this MiSerable disease while you are waiting for your next appointment . I'm glad you are seeing a new doc out on the economy instead of on base. What a difference that can make to your health care.
Searching for answers of neurological disorders is not for the weak - I can tell you aren't - and it takes lots of patience. Neurological time moves about as slow as the ice ages.... it can creep, especially when you are wondering what's going on with your body.
Please come back and ask all the questions you want - this is a hard one to wait out alone.
be well, Lulu
ohh, so when it says no serum sample sent, that's what it meant? They need to take my blood at the same time? does that mean i will more than likely need a repeat LP? :( I don't think I'm ready for that again, and the blood patch was even worse :( Thanks soo much for the tip, that gives me hope that maybe we're not as back to square one as I thought. I do feel a bit silly now, complaining about going through this for 4 months in comparison to the years that alot of you guys on here have endured to get to your diagnosis. Thanks so much for the edvice :)
Shame on whoever did your LP for not getting a blood sample at the same time. THAT'S what they need to show the O bands unique to the CSF, and that's what determines a positive from a negative result.
See the health page on Lumbar Punctures: http://www.medhelp.org/health_pages/Multiple-Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36
In fact, all those Health Pages are super helpful. They were for me, anyway, when I was going through my journey to diagnosis.
Welcome!
See the health page on Lumbar Punctures: http://www.medhelp.org/health_pages/Multiple-Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36
In fact, all those Health Pages are super helpful. They were for me, anyway, when I was going through my journey to diagnosis.
Welcome!
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