Peripheral neuropathy and amyloidosis

in reply to @asergio714 Hi there, I just pulled this off of the internet for you.Amyloidosis is a rare protein disorder that occurs when amyloid, an abnormal protein, builds up in organs and tissues. The buildup can affect the shape of organs.

oneAMYLOIDOSISvoice
Amyloidosis is caused by an excess of antibody protein, which can cause the abnormal light chain
portion or the whole antibody molecule to accumulate in the body's tissues. AA amyloidosis
is caused by an inflammatory disease process.
Most types of amyloidosis are not preventable, but managing kidney disease
may help delay or avoid kidney failure. AA amyloidosis may be preventable if chronic inflammatory conditions are treated early and the inflammation is kept under control.
There's no cure for amyloidosis, but treatments can help manage symptoms and limit the production of amyloid protein. Severe amyloidosis can lead to life-threatening organ failure.
Amyloidosis: Causes, Types, Symptoms, Diagnosis, Treatment ...
Jul 29, 2022

WebMD

in reply to @asergio714 Have you had some recent labs that led your doctor to think you have this disease? It can be very complicated to understand, as are the lab tests that have to be deciphered. Best of luck. I am so sorry tha you are suffering as you are. I can only imagine.

Hello @asergio714, While you wait for others with experience to share with you, I thought you might find the following information from the Amyloidosis Research Consortium (ARC) https://arci.org/ helpful:
--- Neuropathy in Amyloidosis - Symptoms and Management:
https://arci.org/wp-content/uploads/2022/06/Neuropathy-in-Amyloidosis.pdf

@nancyworld, @mguspixi25, @oldkarl and others may have some information to share with you.

Hello John. Hope your Holidays went well. I just had a B6 blood test. My result was 54.3 ng/ml. It said normal was 2.1 to 21.7. Would that result have toxicity affects? I was reading that it takes alot of B6 intake to become toxic. Like over 600 mg daily. I was taking a multi vitamin with 6mg B6. I quit that. I looked at my meds and my food intake. It appears my intake of V6 is not even 15mg daily. Any thoughts? Thanks. Jerry

Thanks Jerry, We had a relaxed Christmas and New Years and didn't wait up to welcome the New Year in. Hoping your Holidays went well also. The B6 toxicity issue can get confusing but I think you are right about the levels. My favorite site that explains it in easy to understand language is Vitamin B6 Toxicity: http://www.easy-immune-health.com/vitamin-b6-toxicity.html.
They mention the toxicity level usually being 1000 mg or more.

"Taking Too Much Can Give You Vitamin B6 Toxicity
One reason that someone might have a high Vitamin B6 level is because they are taking too high a dose of Vitamin B6 supplements. Virtually all multivitamins contain Vitamin B6, but the amounts in multivitamins are too small to cause toxicity unless there are other problems, as discussed below.

For most people, it’s safe to take as much as 200-500 mg per day, and toxicity almost never occurs at levels lower than 1000 mg per day. If you’re taking high levels of Vitamin B6 and you have a high level, then the solution is obvious: stop taking Vitamin B6 supplements. "

I've always viewed it as not wanting to take any vitamins with additional B6 in them or sports drinks that are high in B6 just to avoid that chance that it might make my neuropathy worse.

I was never at toxic levels but stopped taking all b supplements a year ago

Only the complement protein in blood. She wants me to have the fat biopsy and bone marrow done but I don’t think I could afgord or would bother with the treatments as they sound as bad as the disease so..,

Ty for this

Ty

I recently had a fat pad biopsy (within the last few weeks) to check me for amyloidosis. It wasn't the most pleasant of procedures, and one neurologist I visited said he thought it was a waste of my time, but I decided to do it anyway. My primary neurologist ordered this when he was nearing the end of all the other tests we had tried. Since I have not been given a formal diagnosis (so technically it is still idiopathic), I thought I should at least rule this out. Amyloidosis is a serious condition, and should be treated, so it wasn't like it was all for nothing.