Hello all,

Happy Friday! I have a few questions. I know many of you speak about supplements and I was just wondering what are the ones that many of your take. I know for sure that I have POTS (propranolol 20mg 3x a day). I have the tingly feet and hands which the topamax (200 mg a day) and neurotin (300mg a day so far) are helping. I also have sarcoidosis. Just wondering if there are other supplements that I could be taking that could be helping my nerves? I have read many posts but it gets confusing on why some people take what. Also, what about diet?

Secondly, does SFN cause weakness? I have had right sided arm weakness all week. My dr. has ordered a head MRI w/ contrast, but of course I have to wait a couple weeks to get it done, and then probably another week to get the results. The right side of my face has been more tingly/numb, but I can attribute that to SFN because I KNOW that causes the weird tingly feelings, but I just have never heard it causing weakness. Just wondering if anyone knows what would cause the weakness.

Thanks so much for always giving such great advice!

Some here have posted the supps they use for nerve issues. I am the grape seed extract queen as I've been taking it for almost 21 yrs and this OPC class of antioxidant addresses SO MUCH in our bodies and health issues and Nerve issues too.

I've posted about Iodine and Nerve Pain here too I recall. You can look for that post.

The main reason I'm on NT is due to nerve damage from a hip replacement surgery in 2010..it's been a nightmare and going on 6 yrs 80% of my right thigh is Numb. I did get rid of the BURN with Inosine and Sphingolin which I talked about here.

You can do a search with Grape seed extract and your issues and find replies for all of them.

There are so many supps that can help and included are Vit D, magnesium, Vit C and many others, I've been working with supps for over 25 yrs.

weakness means motor nerve involvement. those are long fibers. have you had an emg/ncs recently? ( electromyography/nerve conduction study)

Caroline,
I'm afraid of supplementation. I find the whole thing overwhelming to the point of literal tears. You know so much now, but can you remember how you got started? Is it all trial and error? Do I make a spreadsheet of all the potential supplements and try one then another then another? And if so, do I stop one if it's not working? How do I know which brands are reputable? None of them are regulated and I keep hearing that most of what you spend money on is filler, or worse - things you don't want. Do you go to a store or buy online?

Help please?!

PS - Hopeforthecure - I hope you don't consider this hijacking your thread. I'm sorry. That isn't my intention. And Caroline, if you've answered my questions before and are frustrated, I understand that too. I can go looking for it if you say you've done it already.

Hi hope for the cure

When en bloc says 'motor nerve involvement' and 'long fibers' I think she's referring to long fiber Peripheral Neuropathy (PN) - correct me if I'm wrong here en bloc.
SFN is one subset of PN and refers to damage in smaller nerves (as opposed to larger nerves) - there are over 100 different types of neuropathy and just as many causes. They are mainly divided into 3 different types depending on how they affect the body: Sensory, Motor & Autonomic. Here's a link to a better explanation:

http://www.ninds.nih.gov/disorders/p...neuropathy.htm

It is possible to have more than one type at the same time.
SFN is mentioned in the 'skin biopsy' paragraph under Diagnosis.

. . . and ShaggyChic
As regards supplements - you're right to be cautious and consider them carefully before trying - side affects can be different for individuals - but don't rule them out completely. With PN being so complex I took the approach of first trying to get as accurate diagnosis as possible, then searched for probable cause (eliminating as many unlikely ones as possible). This helps to narrow down options for possible treatment.

Ensuring you get as many essential vitamins and nutrients as possible through your diet is the next step. Research what food sources contain good levels of each nutrient and if you have adequate of those in your diet then your levels should be okay (unless you have a malabsorption condition). Cut out or reduce those foods which could be causing harm - ie sugar, alcohol etc. If you still feel you may still be lacking in certain vitamins (eg. B12, Magnesium, Vit D. etc) get tested and then consider supplementation.

If you are already on prescription medications you need to make sure that any supplements aren't likely to interact. If you decide you want to take a particular supplement only start one at a time to monitor effects. Keep a journal - some supplements will have an immediate effect others may need 3 mths or longer to show any improvement. Remember that more is not necessarily better, eg the highest dose of a probiotic may cause constipation whereas a lower dose may help intestinal issues without causing problems. Sometimes it's a case of try it and see.

To help figure out what is best to buy there is a website that does independent testing: Supplement Rankings - Labdoor

Check for any academic research that may have been done on a specific supplement. Be cautious of website sales hype and any manufacturer funded studies as there may be bias. Also if you have questions about a specific type of supplement you can come here and ask or use the search function.

Hope this is of help and hasn't added to confusion.

You may want to search this keyword:
"Beta blockers myopathy"

There are reports of beta blockers causing myopathy:
example:

Drug-induced myopathies. - PubMed - NCBI

http://mootha.med.harvard.edu/PubPDFs/Setoguchi2010.pdf

Further testing may reveal if your arm weakness is nerve induced, or muscle induced.