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Skeptical of an MS Dx, but curious
32 yo female. I have had idiopathic peripheral neuropathy for 2 years. Burning and tingling in the feet, led to the same feelings in calves and hands in a "glove and stocking" distribution. 2 neuros later: normal bloodwork (no diabetes or pre, thyroid ok, vitamins ok, no metal poisoning, etc) negative VEP, ABR, and nerve conduction studies ok, normal opthalmology exam with Lasik (thorough exam), negative LP, 3 MRIs of brain and spine w/ and w/o contrast show one lesion on splenum of corpus callosum that has never enhanced or changed from an MRI I had for dizziness after the flu in 2003. I have had classic migraine (goes away after going off the pill) since I was 19 yo. The pain and burning in my feet can be very unsettling, depressing and makes me feel like I am sometimes on the verge of disability. I work in a healthcare field and I'm very knowledgeable, so no answers = stress. Yes, I have a history of panic disorder - so that is the red flag that some physicians focus on, a real pity. I am an intelligent person with medical expertise and they can still write me off as a nutcase, I can only imagine those of you without the degrees that are supposed to garner respect. My question is: what is the likelihood that my one, non-enhancing lesion (supposedly they used an "MS protocol" for the MRI) is an indicator for MS? I AM 99.9% sure it is not MS b/c I am in a high stress position, have low blood pressure and I think I'm hypoglycemic but haven't had a glucose tolerance test. Migraines can lead to lesions on the brain and my lesion is non-enhancing, non-changing through 4+ years. So, my theory is: low blood pressure (nurses always ask if I feel ok after they take my BP:) and stress equals poor circulation to the extremities, namely the feet, which leads to nerve cell death and a small fiber sensory neuropathy. Two neuros are sure it is not MS, but I just want your take on this. Either way, we all are dealing with physical issues, chronic pain, fatigue, etc. I feel your pain! Thanks for any insight. Take care all:)
I'm glad you got a lot of good insights from other people.
It occurred to me that I should mention that I do have some symptoms that probably are more associated with central nervous symptom problems. From fairly early on, I have had to get up most nights to urinate (although not always and sometimes more than once), which didn't happen to me before. I also get tingling and some numbness in my face and scalp (which I realize is still the PNS, but it seems to be less common with peripheral neuropathy) and a kind of band of tight pressure around my abdomen or lower ribs (which my uniformed googling made sound like some kind of autonomic neuropathy and I always wondered why the doctors didn't seem more worried about this; it is however pretty common in MS). Eventually, I also started to have balance issues.
Of course, I told the doctors all this, but it didn't make them rethink the idiopathic PN dx. On the other hand, unlike you, I didn't not really notice distinctive relapses and remissions. It sometimes seemed a little better or worse with a general downward trend (I tended to think of it as a general downward spiral with a few brief upward blips).
On the other hand, sometimes symptoms are red herrings and it seems like it can be quite difficult to sort this all out. For example, I went through a period where I was having a lot of pinpricky feelings in my eyes, which I associated with all the other pricking and odd sensations I was having. I am now in a clinical trial and as part of this I had a really thorough ophthalmological exam (including an optical coherence tomography or OCT scan) and the doctor said that as far as he could tell, the MS hasn't damaged my eyes or optic nerve at all (for which I am extremely thankful). I asked him about the pinpricky thing and he said it could have been caused by dry eyes. In fact, this did occur during the period when I was having the most trouble with dry eyes and mouth (it was also, unfortunately, my most promising example of a symptom that actually went away).
Given what the PN neuro told me about idiopathic peripheral neuropathy, I would think that would be a somewhat unusual dx for someone as young as you are so I do hope you find a good neuro who can put all the puzzle pieces together.
sho
It occurred to me that I should mention that I do have some symptoms that probably are more associated with central nervous symptom problems. From fairly early on, I have had to get up most nights to urinate (although not always and sometimes more than once), which didn't happen to me before. I also get tingling and some numbness in my face and scalp (which I realize is still the PNS, but it seems to be less common with peripheral neuropathy) and a kind of band of tight pressure around my abdomen or lower ribs (which my uniformed googling made sound like some kind of autonomic neuropathy and I always wondered why the doctors didn't seem more worried about this; it is however pretty common in MS). Eventually, I also started to have balance issues.
Of course, I told the doctors all this, but it didn't make them rethink the idiopathic PN dx. On the other hand, unlike you, I didn't not really notice distinctive relapses and remissions. It sometimes seemed a little better or worse with a general downward trend (I tended to think of it as a general downward spiral with a few brief upward blips).
On the other hand, sometimes symptoms are red herrings and it seems like it can be quite difficult to sort this all out. For example, I went through a period where I was having a lot of pinpricky feelings in my eyes, which I associated with all the other pricking and odd sensations I was having. I am now in a clinical trial and as part of this I had a really thorough ophthalmological exam (including an optical coherence tomography or OCT scan) and the doctor said that as far as he could tell, the MS hasn't damaged my eyes or optic nerve at all (for which I am extremely thankful). I asked him about the pinpricky thing and he said it could have been caused by dry eyes. In fact, this did occur during the period when I was having the most trouble with dry eyes and mouth (it was also, unfortunately, my most promising example of a symptom that actually went away).
Given what the PN neuro told me about idiopathic peripheral neuropathy, I would think that would be a somewhat unusual dx for someone as young as you are so I do hope you find a good neuro who can put all the puzzle pieces together.
sho
Thank you again, I wish you the best. I have had twitching, burning, fatigue, weakness, etc. I agree that there is power in knowing what it is - just to have a name is worth a bit of money because I am the type of person that needs to know WHY, about anything. I think it is important that we push the medical profession to find answers to things are aren't as common (even though PN is pretty darn common). It's a healthy push for research. Take care, Hope
I really don't know if it's likely you have MS. The neuro who dx'd me thought I was an atypical case and the first two neuros were sure it was PN. But reading this forum it seems like so much with MS can be so varied that who's typical?
I do think if I knew then what I knew now, I would've more strenuously pursued a dx other than idiopathic. The first neuro I saw seemed to think I would just spend a lot of money to find out about something they couldn't do anything about anyway, but there is still power in having a name.
The small nerve fiber biopsy would probably be worthwhile. I think I read that small fiber neuropathy is often very painful. I had a test that measured sweat, which as far as I can tell is the other way they test for small fiber neuropathy.
Lots of people have significant pain with MS. I have a lot of numbness and weird sensations (tingling, burning, tightness, etc.). Also my feet and lower legs and hands often feel really cold to the touch. I do feel weaker, but the doctors don't particularly seem to think so. My endurance for things like walking has gotten worse over time.
By the time I got to the PN neuro, I had three good-sized lesions on the c-spine and a positive LP (13 oligoclonal bands), but my first MRIs were clean.
I try to be thankful, too, for functioning as well as I do. I do hope you find some answers.
sho
I do think if I knew then what I knew now, I would've more strenuously pursued a dx other than idiopathic. The first neuro I saw seemed to think I would just spend a lot of money to find out about something they couldn't do anything about anyway, but there is still power in having a name.
The small nerve fiber biopsy would probably be worthwhile. I think I read that small fiber neuropathy is often very painful. I had a test that measured sweat, which as far as I can tell is the other way they test for small fiber neuropathy.
Lots of people have significant pain with MS. I have a lot of numbness and weird sensations (tingling, burning, tightness, etc.). Also my feet and lower legs and hands often feel really cold to the touch. I do feel weaker, but the doctors don't particularly seem to think so. My endurance for things like walking has gotten worse over time.
By the time I got to the PN neuro, I had three good-sized lesions on the c-spine and a positive LP (13 oligoclonal bands), but my first MRIs were clean.
I try to be thankful, too, for functioning as well as I do. I do hope you find some answers.
sho
Thank you for your comment. I appreciate it. I am a bit worried now, though. I had resigned myself to the idiopathic diagnosis since I have had negative LP, etc etc. I have been considering going to Johns Hopkins to get a biopsy for small fiber neuropathy. What were your symptoms like? More of the weakness and numbness than the pain I describe? Either way, I'm still functioning in this world and will count my blessings. Thanks for any further input in advance!
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I have no idea what the odds of anything medical are, but FWIW I was dx'd with idiopathic peripheral neuropathy for six years. I felt like it kept getting worse and the idiopathic thing drove me crazy so I finally went to see a peripheral neuropathy specialist in the hopes that I could find out what was causing this.
He did some more tests and said I didn't have PN at all and eventually worked his way around to an MS dx. The test that started this change in direction was a somatosensory evoked potential so maybe that would be something to check into. It showed that my problems were coming from the central nervous system and not the PNS.
Your symptoms do sound very similar to how mine started, although I don't have so much pain and no migraines. The PN neuro told me that the majority of people who have idiopathic PN are in their fifties and sixties when they get it and have painful small fiber neuropathy. There are some tests for small fiber neuropathy (I think the one I had was supposed to be 80% accurate). They don't seem to be so widely available, but it might be worth looking into. When I was looking into this I also read that the percentage of people who get left over in the idiopathic category of PN really varies widely depending on where you go and who you see so it might be worthwhile to try to find someone who will pursue the cause of this more aggressively.
I hope you find some answers and relief.
sho
He did some more tests and said I didn't have PN at all and eventually worked his way around to an MS dx. The test that started this change in direction was a somatosensory evoked potential so maybe that would be something to check into. It showed that my problems were coming from the central nervous system and not the PNS.
Your symptoms do sound very similar to how mine started, although I don't have so much pain and no migraines. The PN neuro told me that the majority of people who have idiopathic PN are in their fifties and sixties when they get it and have painful small fiber neuropathy. There are some tests for small fiber neuropathy (I think the one I had was supposed to be 80% accurate). They don't seem to be so widely available, but it might be worth looking into. When I was looking into this I also read that the percentage of people who get left over in the idiopathic category of PN really varies widely depending on where you go and who you see so it might be worthwhile to try to find someone who will pursue the cause of this more aggressively.
I hope you find some answers and relief.
sho
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