Aa
frustrated in Arizona
Hello, I'm Andrea "Andi", 42, female. You all seem like a great group of very friend people! :o) Some of you have been through so much and are such an inspiration!
I had an MRA (not MRI) in 2000 after an ER visit which they thought was a cerebral aneurysm. I had three more such episodes over the next 18 months, each time with a spinal tap to make sure that I wasn't having an aneurysm. The MRA in 2000 showed white matter lesions and I was sent to a neurologist who sent me for blood tests to determine whether or not I had MS. I had another MRI in 2006 and the WMLs had multiplied by at least 10 and, again, blood tests were done to test for MS. I asked my neuro if blood tests were THE test to diagnose MS and she said yes and that I did NOT have MS.
So I am on migraine meds (yes I do have/had migraines-the meds are helping) but now that my weird stuff is coming back - leg giving out all of the sudden, fatigue & weakness in my arms and shoulders (alternating), pins/needles/tingling/numbness in one foot, etc....I'm seeing all this reference to testing spinal fluid. I've had three neuro docs and none of them has even mentioned this. Is there something in my blood that would have ruled out the need to test the spinal fluid? The three times they drew spinal fluid to see if there was blood in it for fear of hemorrhage, would they have seen any flags for MS or would that have to been a specific test?
I'm frustrated mainly because it seems like my doctors want to hand me pain pills and send me home. One new fam med doc I saw (once) was asking me my basic history and when I mentioned the WMLs, he said, "Pffffhhhh! Everybody has white matter lesions. That has nothing to do with anything, especially your pain. You need to be more active, loose some weight and that will solve all your problems." My response was "Oh, I see, so only skinny people die of old age." ;o) By the way, I VERY active - the more active I am, the better I feel. (Watch me in action: www.youtube.com/andidance) :o)
So do I need to ask my neurologist why she hasn't had the spinal fluid tested? Any thoughts?
I had an MRA (not MRI) in 2000 after an ER visit which they thought was a cerebral aneurysm. I had three more such episodes over the next 18 months, each time with a spinal tap to make sure that I wasn't having an aneurysm. The MRA in 2000 showed white matter lesions and I was sent to a neurologist who sent me for blood tests to determine whether or not I had MS. I had another MRI in 2006 and the WMLs had multiplied by at least 10 and, again, blood tests were done to test for MS. I asked my neuro if blood tests were THE test to diagnose MS and she said yes and that I did NOT have MS.
So I am on migraine meds (yes I do have/had migraines-the meds are helping) but now that my weird stuff is coming back - leg giving out all of the sudden, fatigue & weakness in my arms and shoulders (alternating), pins/needles/tingling/numbness in one foot, etc....I'm seeing all this reference to testing spinal fluid. I've had three neuro docs and none of them has even mentioned this. Is there something in my blood that would have ruled out the need to test the spinal fluid? The three times they drew spinal fluid to see if there was blood in it for fear of hemorrhage, would they have seen any flags for MS or would that have to been a specific test?
I'm frustrated mainly because it seems like my doctors want to hand me pain pills and send me home. One new fam med doc I saw (once) was asking me my basic history and when I mentioned the WMLs, he said, "Pffffhhhh! Everybody has white matter lesions. That has nothing to do with anything, especially your pain. You need to be more active, loose some weight and that will solve all your problems." My response was "Oh, I see, so only skinny people die of old age." ;o) By the way, I VERY active - the more active I am, the better I feel. (Watch me in action: www.youtube.com/andidance) :o)
So do I need to ask my neurologist why she hasn't had the spinal fluid tested? Any thoughts?
Hi! Welcome back!
I am so sorry to hear that the WML's are still increasing. Also sorry the spinal tap was painful, that is unusual, but sometimes is the case. I have not read anything about MS causing high CSF pressures. You need to discuss this with your neurologist.
I am very glad you are pleased with your neuro. And I am as dismayed as you to consider the loss of time caused by the other docs who were clearly too lazy to even think. You see my comments above about what you wrote.
I also have had loss of my income, my home and my profession from a combination of disability and divorce (I had a bankruptcy). So, to a degree I also understand that pain.
So it looks like now they will be putting the pieces together. I really hope so for your and your kids' sake. What a mess! I can't believe the number of people who come here telling us that their doctors went looking for lesions, found lesions, and discounted them as normal. Say again...??? As I said on another thread, that's like going in to investigate a robbery, looking to see if someone broke the lock to get in, finding a broken door lock, and then saying, "Well, I guess a strong wind must have torn off this here lock. At least there's no evidence that someone broke in!"
Glad to see you back, and your news is .... okay. At least you're making progess toward getting some answers. You have to meet all of our new family!
Quix
I am so sorry to hear that the WML's are still increasing. Also sorry the spinal tap was painful, that is unusual, but sometimes is the case. I have not read anything about MS causing high CSF pressures. You need to discuss this with your neurologist.
I am very glad you are pleased with your neuro. And I am as dismayed as you to consider the loss of time caused by the other docs who were clearly too lazy to even think. You see my comments above about what you wrote.
I also have had loss of my income, my home and my profession from a combination of disability and divorce (I had a bankruptcy). So, to a degree I also understand that pain.
So it looks like now they will be putting the pieces together. I really hope so for your and your kids' sake. What a mess! I can't believe the number of people who come here telling us that their doctors went looking for lesions, found lesions, and discounted them as normal. Say again...??? As I said on another thread, that's like going in to investigate a robbery, looking to see if someone broke the lock to get in, finding a broken door lock, and then saying, "Well, I guess a strong wind must have torn off this here lock. At least there's no evidence that someone broke in!"
Glad to see you back, and your news is .... okay. At least you're making progess toward getting some answers. You have to meet all of our new family!
Quix
Hi, isn't this forum just the greatest? I'm glad you found it; it has been very helpful to me.
I'm sorry for the wasted time and and incompetent health care you received, and glad you found someone you are comfortable with. My LP was uncomfortable; it was done by a radiologist and he tried three times before he got fluid, and I ended up with a spinal headache. I read the report, and it said my CSF was pink and cloudy, which I'm pretty sure means I had a "traumatic tap".
It is helpful to always request your lab test results and radiology reports and films. I have quite a collection of MRIs on CDs. :o)
I live in Oregon, but I'm coming to Arizona next weekend. I'm going to Phoenix for the WNBA season opener and ring ceremony for the Mercury. I'll wave at you as I fly over!
Kathy
I'm sorry for the wasted time and and incompetent health care you received, and glad you found someone you are comfortable with. My LP was uncomfortable; it was done by a radiologist and he tried three times before he got fluid, and I ended up with a spinal headache. I read the report, and it said my CSF was pink and cloudy, which I'm pretty sure means I had a "traumatic tap".
It is helpful to always request your lab test results and radiology reports and films. I have quite a collection of MRIs on CDs. :o)
I live in Oregon, but I'm coming to Arizona next weekend. I'm going to Phoenix for the WNBA season opener and ring ceremony for the Mercury. I'll wave at you as I fly over!
Kathy
Thanks so much for your comments. I haven't been on the forum in a while so I didn't see them until now - so definitely no worries about your "late" comments! :o)
Since my post I've had another MRI. A snippet:
"Impression: Multiple small deep white matter lesions that are most consistent with MS plaques in both cerebral hemispheres. There are at least ten lesions in each hemisphere, measuring up to 6mm in greatest dimension. The majority of these measure 2-3 mm in size. There has been an increase in size and number of plaques since the previous examination."
I was quickly referred to an anesthesiologist for a spinal tap. It was extremely painful which I don't remember the other three being; I just remember the pressure sensation. I was in full blown tears this time with pain in my back and shooting down my legs. The anesthesiologist performing the procedure was telling her assistants that my fluid pressure both going in and coming in was very high and that all of this was rare but common in patients with MS. I haven't yet had my follow-up appt with my neuro yet to go over all of the results of the spinal fluid tests.
So far I'm pleased with my current neuro and just still in shock about the other two from Colorado. I mean, why waste precious time and let the patient decide whether or not she/he wants to be poked with a spinal tap just to even rule out MS. Now I'm 8 years down the road and I could have used that time to at least manage it if not stunt it. In the last three years, I've lost my career, my house, my car, and most importantly precious time with my kids. I'm trying to stay positive and I' know I'll get through this. I really appreciate that you all are here to "listen". I'm truly sorry for all you've gone through and I hope to learn from your strength! :o)
Thank you for caring enough for posting! All of you!
Andi
Since my post I've had another MRI. A snippet:
"Impression: Multiple small deep white matter lesions that are most consistent with MS plaques in both cerebral hemispheres. There are at least ten lesions in each hemisphere, measuring up to 6mm in greatest dimension. The majority of these measure 2-3 mm in size. There has been an increase in size and number of plaques since the previous examination."
I was quickly referred to an anesthesiologist for a spinal tap. It was extremely painful which I don't remember the other three being; I just remember the pressure sensation. I was in full blown tears this time with pain in my back and shooting down my legs. The anesthesiologist performing the procedure was telling her assistants that my fluid pressure both going in and coming in was very high and that all of this was rare but common in patients with MS. I haven't yet had my follow-up appt with my neuro yet to go over all of the results of the spinal fluid tests.
So far I'm pleased with my current neuro and just still in shock about the other two from Colorado. I mean, why waste precious time and let the patient decide whether or not she/he wants to be poked with a spinal tap just to even rule out MS. Now I'm 8 years down the road and I could have used that time to at least manage it if not stunt it. In the last three years, I've lost my career, my house, my car, and most importantly precious time with my kids. I'm trying to stay positive and I' know I'll get through this. I really appreciate that you all are here to "listen". I'm truly sorry for all you've gone through and I hope to learn from your strength! :o)
Thank you for caring enough for posting! All of you!
Andi
Hi, I'm sorry for my belated comments. I hope you see them. I am the local unofficial medicalperson here, having been a physician in a former life. I am so sorry for what you are going through and that defective and ignorant neurologists have not seen fit to address your very real problems.
I don't believe the techniques used in an MRA are optimal for visulaizing white matter lesions. But the sudden and severe episodes that appeared to be aneurysms are concerning. What do the doctors think have happened to you?
I am very concerned that the WML have increased so rapidly. Do you have the reports of the MRIs? It would be good to hear the descriptions of these lesions, their size, shape and locations. The original neurologist who told you she was sending blood tests to diagnose MS was either lying to you so she didn't have to deal with your case or such an imbecile that she really doesn't know the first thing about diagnosing MS.
You were told correctly above that THERE ARE NO BLOOD TESTS TO DIAGNOSE MS. The blood tests that are done are to look for things that mimic MS like infections, autoimmune diseases and vasculitis, small strokes, metabolic diseases, vitamin deficiencies, etc.
You say "your weird stuff is coming back." How many bouts of it have you had? Would you be able to tell us in more detail about the way the symptoms show up, how long they last and how many bouts/attacks you have had with them?
The diagnosis of MS is made beginning with a careful history looking for the typical pattern of attacks of symptoms which come, stay a while, then resolve to some degree or another. The symptoms may be old ones you've had before, new ones or a combination. Then a very thorough neuro exam is done looking for signs on the physical that point to a neurological basis for the symptoms. Do you know if your neuro exam has any abnormalities on it?
When did the weird symptoms begin?
No, not everyone at 41 has WMLs ( or WMDs for that matter). And in the context of many different kinds of neurologic symptoms like you describe the WMLs must be checked out very thoroughly. It does not sound like they have done this. At the very least you need a good, preferably high power MRI of your spine. If you have lesions in your spine then it is much more likely to be MS or a couple other things. Migraines do not cause lesions in the spine.
The spinal taps they did in the ER were most likely just sent for the basic things, but not the things that would show MS. Many ERs do not allow that kind of testing for chronic diseases. So, after an MRI of your spine done without and with contrast, uf there was still a question, you would need a spinal tap done for MS protocol.
Oh, and you need a new neurologist! Dr. Dodo is not capable of diagnosing MS. I also recommend attending an MS support group and checking with people to see which doctors they know are thorough, competent and compassionate. I do not think you should waste your time with the current neuro. I cannot believe (well, actually I can) that she has given you such patently and bizarrely wrong information.
BTW - If your symptoms do have a waxing and waning nature to them, and if you have some abnormalities on your exam, like weakness, hyperreflexes, poor coordination, poor balance, loss of sensation, etc, then you do have the "proper clinical setting for MS." as mentioned by one of the radiologists.
So, basically you are in the wrong hands. You need a good and thorough check by an MS specialist. Doc's that want to hand out pain meds (though often needed and appropriate) but do not really want to arrive at a diagnosis leave you feeling very helpless, frustrated, and lost. We know that you don't want MS, but you know something is very wrong and you need answers. Because if this is MS and it has gone diagnosed for some years, you have lost precious time to slow it down. It has been shown that MS in the first years is MORE responsive to the Disease Modifying Drugs than the disease is in the later course.
I hope you stay with us as all this unfolds. You didn't get proper attention over the weekend, but I thank Amy, Ess, Sally, and MCBCON for jumping in and giving such right-on advice.
Quix, MD
I don't believe the techniques used in an MRA are optimal for visulaizing white matter lesions. But the sudden and severe episodes that appeared to be aneurysms are concerning. What do the doctors think have happened to you?
I am very concerned that the WML have increased so rapidly. Do you have the reports of the MRIs? It would be good to hear the descriptions of these lesions, their size, shape and locations. The original neurologist who told you she was sending blood tests to diagnose MS was either lying to you so she didn't have to deal with your case or such an imbecile that she really doesn't know the first thing about diagnosing MS.
You were told correctly above that THERE ARE NO BLOOD TESTS TO DIAGNOSE MS. The blood tests that are done are to look for things that mimic MS like infections, autoimmune diseases and vasculitis, small strokes, metabolic diseases, vitamin deficiencies, etc.
You say "your weird stuff is coming back." How many bouts of it have you had? Would you be able to tell us in more detail about the way the symptoms show up, how long they last and how many bouts/attacks you have had with them?
The diagnosis of MS is made beginning with a careful history looking for the typical pattern of attacks of symptoms which come, stay a while, then resolve to some degree or another. The symptoms may be old ones you've had before, new ones or a combination. Then a very thorough neuro exam is done looking for signs on the physical that point to a neurological basis for the symptoms. Do you know if your neuro exam has any abnormalities on it?
When did the weird symptoms begin?
No, not everyone at 41 has WMLs ( or WMDs for that matter). And in the context of many different kinds of neurologic symptoms like you describe the WMLs must be checked out very thoroughly. It does not sound like they have done this. At the very least you need a good, preferably high power MRI of your spine. If you have lesions in your spine then it is much more likely to be MS or a couple other things. Migraines do not cause lesions in the spine.
The spinal taps they did in the ER were most likely just sent for the basic things, but not the things that would show MS. Many ERs do not allow that kind of testing for chronic diseases. So, after an MRI of your spine done without and with contrast, uf there was still a question, you would need a spinal tap done for MS protocol.
Oh, and you need a new neurologist! Dr. Dodo is not capable of diagnosing MS. I also recommend attending an MS support group and checking with people to see which doctors they know are thorough, competent and compassionate. I do not think you should waste your time with the current neuro. I cannot believe (well, actually I can) that she has given you such patently and bizarrely wrong information.
BTW - If your symptoms do have a waxing and waning nature to them, and if you have some abnormalities on your exam, like weakness, hyperreflexes, poor coordination, poor balance, loss of sensation, etc, then you do have the "proper clinical setting for MS." as mentioned by one of the radiologists.
So, basically you are in the wrong hands. You need a good and thorough check by an MS specialist. Doc's that want to hand out pain meds (though often needed and appropriate) but do not really want to arrive at a diagnosis leave you feeling very helpless, frustrated, and lost. We know that you don't want MS, but you know something is very wrong and you need answers. Because if this is MS and it has gone diagnosed for some years, you have lost precious time to slow it down. It has been shown that MS in the first years is MORE responsive to the Disease Modifying Drugs than the disease is in the later course.
I hope you stay with us as all this unfolds. You didn't get proper attention over the weekend, but I thank Amy, Ess, Sally, and MCBCON for jumping in and giving such right-on advice.
Quix, MD
Thanks for your comments. Everyone is very helpful here and it is so very much appreciated! :o)
There are good pain medications for the treatment of MS Symptoms.
These drugs by the way are for nuerological issues and not for normal pain.
These drugs by the way are for nuerological issues and not for normal pain.
Hi and welcome. I agree with all of the above. Also, do you know any nurses by chance? They are an excellent resource for finding a doctor. Do you have copies of your LP results? You should be able to see if they tested for certain things that they use to look for signs of MS. Also, get copies of the radiologist's reports from your MRA's, and MRI. I don't necessarily trust the doctors when they say "everything is normal". (I had a doctor say that to me only to find out my lesions had grown and mutiplied in a ten month period. Radiologist stated "this is consistant with MS in the proper clinical setting." Doctor looked at me and said "I disagree with that. I think they are from your fibromyalgia. ???) Got to a new neuro asap, he diagnosed MS and I am now on Copaxone. God bless you, if you think something is funky keep on keepin' on. Amy
Thanks so much for the welcome and the quick replies. I have looked up the Arizona Chapter of the MS Society and will call them to search for a neuro who specializes in MS.
Thanks again and good health to you!
Andi :o)
Thanks again and good health to you!
Andi :o)
Hello Arizona Andi! I too welcome you.
Sally said it all. Don't waste time with a neuro who says there are blood tests for diagnosing MS. That's crazy. Find a neuro who specializes in MS. There have been many helpful posts here on this subject.
Good luck to you.
ess
Sally said it all. Don't waste time with a neuro who says there are blood tests for diagnosing MS. That's crazy. Find a neuro who specializes in MS. There have been many helpful posts here on this subject.
Good luck to you.
ess
Hi Andi,
Welcome.
Sounds like you need a new neuro. There is no blood test for MS, only tests to rule out other possible causes of your symptoms. You definitely should be being fobbed off like this with the symptoms you describe, which could well be MS.
Even spinal tap is only useful if it is positive. Negative also doesn't rule out MS.
I think you need to be seen by a neuro who specialised in handling MS. Is there a MS society in your area? Maybe you can go along, talk to members and find the name of a good Dr.
Sorry, quickie response here I am in the middle of work, but didn't want to leave you unanswered too long...
Someone else will hop in and answer you as well soon.
Sally
Welcome.
Sounds like you need a new neuro. There is no blood test for MS, only tests to rule out other possible causes of your symptoms. You definitely should be being fobbed off like this with the symptoms you describe, which could well be MS.
Even spinal tap is only useful if it is positive. Negative also doesn't rule out MS.
I think you need to be seen by a neuro who specialised in handling MS. Is there a MS society in your area? Maybe you can go along, talk to members and find the name of a good Dr.
Sorry, quickie response here I am in the middle of work, but didn't want to leave you unanswered too long...
Someone else will hop in and answer you as well soon.
Sally
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