[podpeople]

Hello:
I have been wearing hand splints at night and taking 100 mg/day of b6.
Nothing has improved. My numbness is worse. Sometimes I get numb not just in hands but also arms. My feet are also worse than they used to be.
I don't know what this means.Am I getting worse? Or is this normal for neuropathy.
I am not taking any other meds and Dr.doesn't know what is wrong.
Any suggestions as to what I should be doing?
Thanks

[mrsD]

I think you should stop the high dose B6. Some people just cannot tolerate it.

If you haven't had B12 and Vit D tested yet, I'd have that done.
You should be at 400pg/ml at least on the B12.

There are tests for various antibodies that thicken the blood, and can cause numbness and pain.
I'd get those done if you haven't already.

This is what Dr. Latov tests for with PN:
https://www.questdiagnostics.com/tes...ripheralNeurop

The antibody tests are listed there.

[Aussie99]

Originally Posted by podpeople

Hello:
I have been wearing hand splints at night and taking 100 mg/day of b6.
Nothing has improved. My numbness is worse. Sometimes I get numb not just in hands but also arms. My feet are also worse than they used to be.
I don't know what this means.Am I getting worse? Or is this normal for neuropathy.
I am not taking any other meds and Dr.doesn't know what is wrong.
Any suggestions as to what I should be doing?
Thanks

I agree with Mrs, D on the B6.
Is there any pattern to numbness? Such as night/day or hot cold weather? I too had terrible numbness in many areas that seemed to get worse and then one day all feeling came back. It's very unsettling I know. My partner wakes up with numb hands every morning and I rub them until feeling comes back. I keep telling him I think he has nerve entrapment, as it's always after sleep that it happens. Have you seen a doctor?

[podpeople]

Hi Mrs.D and Aussie99

My b12 is 375 and vit D 33 ( up from 8)
I had blood tests for immunoglobulin g,a,m. The M was elevated at 301 with polyclonal gammopathy.
I am seeing a neurologist. Hands and feet are numb during day also but it gets worse at night.
I also have other symptoms.

[Aussie99]

Originally Posted by podpeople

Hi Mrs.D and Aussie99

My b12 is 375 and vit D 33 ( up from 8)
I had blood tests for immunoglobulin g,a,m. The M was elevated at 301 with polyclonal gammopathy.
I am seeing a neurologist. Hands and feet are numb during day also but it gets worse at night.
I also have other symptoms.

I have learned that Vitamin D is low in most autoimmune disorders and therefore getting heaps of notice now. When I go to my endo for my Graves (autoimmune thyroid) my Vit D is always checked.

I am not certain that getting Vitamin D from a tablet/capsule and getting it directly from the sun is equivalent in terms of goodness or synthesized the same way in the body. I have also read that Vitamin D is actually not a vitamin but a neurohormone. When I went to Europe this past July, I had almost 8 weeks of full on sunshine many hours a day and my numbness/tingling completely went away. When I came back home (winter in Oz) numbness returned within first 5 days.

In terms of the M immunoglobulan being elevated, it can mean something (autoimmune,infection) or nothing really. Blood tests should be repeated periodically and clinical signs/symptoms evaluated together to paint a whole picture for your doctors. I have had positive ANA tests myself only to repeat and they are negative.

In terms of nerves I learned that even when the problem is corrected it can take a long time for nerves to settle down and or heal. Nerve tissue is very delicate and repairing it is a very slow process.

If I were in your situation with numb hands that were bothering me I would look to make sure I did not have nerve compression (carpal tunnel) as that is getting more common. My dad had to have his hands operated on because they were numb all the time. Then I would look into PT for my hands. I would increase my B12 & D, and take a good multivitamin. I would also look at food allergies/sensitivities and other vitamin deficiencies, and repeat my blood tests also checking for thyroid. I never thought that I had thyroid issues and totally believed my old GP when he said to me 9 years ago my thyroid tested fine. It turned out I had been hypothyroid for probably a few years which turned into Graves Disease in 2009. I only found out about the Graves because I had lost so much weight,sweating, and all my hair was falling out, so they ran a complete thyroid panel. If this was the cause or contributing factor to my neuropathy, since thyroid hormones are at cellular level, it will be a lifetime of maintenance. I try not worry about things that may never happen anymore. The stress of worry is more detrimental in the short term than the PN in many instances (such as with me).

Also pain is almost always worse at night. I have read countless threads where people say that the PN is worse at night. This happens for a few reasons that I know of. First, other distractions ar usually gone and brain can then focus solely on pain. Anxieties & fears are worse at night. Also sometimes air quality/pressure changes in the evening and this can affect peoples pain levels.
I hope I helped a little bit, I truly wish you luck.

Aussie

[glenntaj]

--monoclonal gammopathies are a known cause of neuropathy, whether they are of "undetermined significance" or associated with other blood disorders.

This is the thought to be the result of the antibodies cross-reacting with certain nerve structures. Quite often, there are also other autoantibodies to components to peripheral nerve present, such as antibodies to myelin associated glycoprotein (anti-MAG). These should be tested for.

See:

http://neuromuscular.wustl.edu/antibody/mprotein.htm

http://www.neuropathy.org/site/DocSe...pdf?docID=1061