painful peripheral neuropathy?
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November 24, 2007 at 11:19 pm
I recently had an aunt on my mother’s side of the family who is very close to my age start having very similar symptoms to my cidp. Unfortuneatly she is in managed care in California and has really had a bizarre set of diagnosis results and care. Her final diagnosis is painful peripheral neuropathy – sounds bizarre to me – she does suffer from this but it does not seem like a diagnosis or syndrom to me or what I can find on the web through searching.
She does have severe sensory pain especially in her hands and feet. She has loss of balance and muscle strength. She has had an MRI – her original diagnosis was MS – but the MRI was clear. Then a an EMG – which was abnormal – how that is unsure – the neurologist actual did the test himself and used a calculator to figure the waves. Even here in the middle of no-where in South Dakota we have digital emg tests and I get a copy at the end!
I am just looking to see if anyone has heard of anything like this?
I recupping from my surgeries and getting ready to go to mayo where I will mention my aunt – they are also interested in the genetic connection.
Thanks – Lisa
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November 24, 2007 at 11:52 pm
Actually, I am not surprised at all by this dx, as there are literally hundreds of causes for peripheral neuropathy. Those of us with CIDP always tend to think someone has our illness when the symptoms present in the same manner. But having said that, it does sound as if she could have CIDP, because of the abnormal EMG. But at Mayo they used a sural nerve biopsy, an LP & two sets of EMGs before they told me I had CIDP. Then I underwent a mountain of tests to rule out anything else that could be going on, such as leukemia or lymphoma. I had a nerve biopsy, a spinal nerve root biopsy, a bone marrow biopsy, CT Scans, 4 complete sets of MRIs, X-rays, EMGs, NCSs, etc. Every day it was some new test! But I did have a very bad case of CIDP…
In the case of your aunt, because of her age & where she is living, they might not want to put her through all of that. But she should at least be given neurontin if she has nerve pain & maybe IVIG could be tried? I don’t know her circumstances all that well…
Pam -
November 25, 2007 at 1:26 am
But her on Neurontin – they pushed that to the point that she became ill at the high dose and was feeling very little reflief. Then they tapered her off that with no other medications – she has tried accupuncture to try and find some relief. They plan on putting her on cymbalta – I think that is a antidepresent. They have run some blood labs but have not pushed the more major tests.
I agree – mayo put me through a week of tests and that was after my local had already done them – but they repeated to confirm. It wasn’t until all the pieces were explored that I got my diagnosis and they still observe me closely.
I keep hoping that my aunt will explore a second opinion – but I know how easy it is to trust your doctors or how much you want to trust them.
Lisa
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November 26, 2007 at 11:50 am
I understand your concern viewing the similarities with CIDP.
When I watch threads like this, I cannot resist in comparing with my thyroid problem. The symptoms are similar too 🙂
I do not have GBS or CIDP, but this forum has been my family of help during the time when I was undiagnosed. My symptoms turned out to be hypothyroidism/Hasmimoto’s (the autoimmune variant) with B12 vitamin anaemia.
When I first went to hospital, I was examined for GBS, MS, Borrelia, celiac and a lot of other things. I had CT, MRI, blood tests, emg test, etc. The doctors did not find out anything and sent me home with severe vertigo and not being able to walk on numb, aching, sleepy, tingly legs with weaker and weaker muscles. This was all over my body. Aching muscles everywhere – pain moving around. Not being able to distinguish hot from cold in certain spots on the skin. Dropping things from my hands, not being able to carry (had to use backpack). Tongue feeling larger, hair falling out creating small nests when bathing, extreme fatigue, memory and concentration problems, depression etc.
Thyroid problems are common, if you are in your fourties or older, etc. Check out this forum: [HTML]http://thyroidhost.proboards30.com/index.cgi[/HTML]
Your relative should be checked for the following by blood tests:
diabetes, Thyroid: TSH, T4, T4 free, T3, T3 free, TPO antibodies, TRAS antibodies, deficiency in B12 vitamin also called cobalamin, iron deficiency, ferritin, transferritin, D vitamin, Calcium, Potassium and what others in this forum might recommend.Thyroid problems are often accompagnied by other co-morbid conditions, and thyroid problems can be a bit difficult to get diagnosed as well.
Very many people suffering from thyroid problems are perscribed anti-depressans for years before being diagnosed correctly with a thyroid disorder.
If you read the symptoms of B12 deficiency, you will notice that this too can give peripheral neuropathy.
Anyway, it is worth to rule out the above, but as Pam says there are hundreds of reasons for peripheral neuropaties. With luck you may find the right one 🙂
Good luck for your relative!
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November 26, 2007 at 5:22 pm
Has diabetes been ruled out? I have a friend w/type 2. She didn’t take it seriously, since she didn’t have to take insulin. She now has a very painful small-fiber (sensory) neuropathy as a result. Many times, people don’t know they have diabetes until something happens and they get tested for it.
Wouldn’t hurt to check.
Best wishes,
cd
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