Question re: Improvement in Neuropathy
 

All - I posted this under LizaJane's Sticky on Neuropathy improvement, but it wasn't answered so I'm posting here to ask my question. LizaJane says "If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal."

Does her statement mean that in folks with CIDP or Sjogren's, the peripheral nerves CANNOT heal? Curious. I have autoimmune symptoms closely related to Sjogren's but I do not fit the strict American-European Criteria for Sjogren's. I have PN in both legs all the way up to my butt. It's been slowly worsening for 16 years. If my problem is autoimmune related, does LizaJane's statement mean that my PN will not improve?

I've been taking ALA, many antioxidants and fish oil for years, but was off all supplements for the past two months to get some bloodwork done, just going back on supplements today. Planning to add CoQ10, aceyl L Carnitine and DHEA.

Just wondering how much emphasis to place on supplements. If I have CIDP or Sjogren's, will the supplements help at all?

It is really hard to say.

If the process creating the damage continues in some way, there will always be damage. You could pace it, and 1)heal at a rate that may be higher than the damage causes,2) they stay the same rate so you may see no progression, or 3) less which would lead to progression of symptoms.

We don't know enough about what is causing damage in say Sjogren's or seronegative MG or MS etc.

People who stay ahead of the damage by using healing supplements, may relapse when they go off the supplements used. (since the process causing the grief is continual).

The studies on ganglioneuritis and the damage to nerve fibers in the ganglia which may be a genetic weakness, or viral, may shed some light on this. Stem cell therapy or something similar may be discovered in the future.

We just know that there are studies showing improvements using various supplements...and that's all we have to go by at this time.

To date, there is no 'known' effective treatment for ganglioneuritis due to Sjogren's. However, that DOESN'T mean that you can't get some mild relief from symptoms or slow progression from supplement use. Anything is possible based upon each individual and severity of the condition. So it certainly can't hurt.

On the other hand, I would suggest not speculating or worrying about a Sjogren's diagnosis until you have one. There are many things that can cause sicca symptoms...even more that can cause PN.

Hopefully your symptoms are not caused by Sjogren's and are treatable.