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.
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
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
