[ellsac]

Hello,

I have had two appointments with my new neuro, Dr. Russell Chin at Weill Cornell.

First, he is awesome, and I recommend him to anyone dealing with neuropathy. He has a great sense of humor.

He gave me a very thorough clinical exam, plus a QSARt sweat test, EMG, and Nerve Conduction test. It seems that all three came back normal!! This is good news for me, as that means only the sensory nerves are affected (at least at this point-but Dr. Chin feels it will probably stay that way). It seems to be pretty much head to toe as far as the sensations I get, with maybe the hands feeling a bit worse than anything else.

We have exhausted all tests thus far (we went through checklists together), although he is willing to test again for possible rheumatology causes once a year or so since I already have an autoimmune disease.

I didn't have my MTHFR tested, but I am going to be supplementing Methylfolate and the methyl form of B12 anyway.

I am in the process of dealing with a flare, which is probably the longest flare I have had thus far. Not sure what set it off, but it has been very cold the past week, so maybe it is aggravating my symptoms.

I am starting the following supplements:

b12/folate (active methyl forms) in the morning with breakfast
R-lipoic acid/L-cartine in morning on empty stomach
Magnesium (natural calm) at night before bed

I am going to leave it at just these for now, as I want to be able to notice changes and progress, even though it is hard to resist the urge to throw the entire kitchen sink at it haha.

My diet is already pretty good, breakfast is usually something like quinoa with walnuts and almond milk, lunch is normally salad, snacks are fruit (apples, grapes, etc), and dinner during the work week is a smoothie (grass fed whey protein, blueberries, kale, chia seeds, and fresh turmeric root).

Supplements I am considering in the future are: Gotu Kola and Q10 (poor circulation runs in my family), Vit E (my test came back normal, but low normal), Benfothiamine (my B1 came back normal, but low side of normal).

So I'll see how it goes from here.

I voiced my concerns and fears to Dr. Chin about being relatively young (34), there being no known cause, and my desires to start a family soon.

He told me that there is no way to accurately predict how I will do in the future, but that I should definitely go ahead and try for a family no matter what, and that he sees no reason to stop myself from that.

We both agreed that no meds would be taken at this point, as I can handle the current pain level. If that changes, we can discuss possible medications.

Anyway-I just wanted to give an update on my situation.

[ellsac]

I also wanted to say that I have found that my mental state plays a part in how I feel-anxiety and stress is a ticket to flare-town for me.

I am sure this happens for any number of reasons.

One question I have-I plan on starting an exercise program. I can walk, so I'd rather do that instead of biking so I can get the weight bearing benefits for my bones also. I know I need to start slowly. Does anyone have any advice?

I also would like to start some mild yoga/pilates.

I find I hardly notice the neuropathy when I am moving around.

[mrsD]

Make sure your shoes are roomy enough, and not too tightly laced. Tight laces compress the nerves on the instep. Some athletic shoes come with really thick padded tongues in shoes. I find them very nice, myself.

[ellsac]

My new sneakers are pretty nice for those reasons specifically-roomy but not too loose, and a padded tongue.

[zkrp01]

Originally Posted by ellsac

I also wanted to say that I have found that my mental state plays a part in how I feel-anxiety and stress is a ticket to flare-town for me.

I am sure this happens for any number of reasons.

One question I have-I plan on starting an exercise program. I can walk, so I'd rather do that instead of biking so I can get the weight bearing benefits for my bones also. I know I need to start slowly. Does anyone have any advice?

I also would like to start some mild yoga/pilates.

I find I hardly notice the neuropathy when I am moving around.

Hello ellsac, I am trying to wean myself from a walker and found in my town a recreation center that is subsidized by the parks & recreation dept. There is the equipment choices a person needs and water Zumba classes for non weight-bearing work also. Carving out time for your own benefit is a good way IMHO to reduce the stress that bombards us all. Good Luck, Ken in Texas.

[ellsac]

Thanks, Ken.

I think you are absolutely right. I am an artist, and also an avid reader, so I plan to make sure these two things are priorities for me as far as managing stress.

[glenntaj]

--Dr. Chin would tell you to exercise to tolerance (he certainly did me).

(Agreed--one of the best neurologists out there for investigating neuropathy, and one of the few who has a sense of humor.)

[ellsac]

Yes, Glenn...after I had all the tests done (especially the nerve conduction test-youch), I said to him "wow, they just give you guys all the fun tests." haha we both had quite a chuckle about that...it is refreshing to have a knowledgeable doctor who can also laugh with you.