Big issues

[marsha2306]

Seeing a neurologist (not the one for RLS) for the horrible pain and numbness in my hand that’s from last year’s flu shot (which caused the very rare condition of transverse myelitis.)

I have already been taking 1200 mg gabapentin for the RLS which was totally controlling it until i was put on Cymbalta for nerve pain also by this doc. Now my RLS has flared up worse than ever. The doc had thought because it was an SNRI and not an SSRI it would cause a problem. So, it is, and now I’m at a loss. I need something directed at nerve pain. Any ideas?

[Hidden]

I tried Cymbalta and within 3 days I was climbing the walls.

[marsha2306 in reply to Hidden]

Took about 3 weeks for me. It’s worse than it ever has been, even when i was taking Citalopram.

[Neil46]

Hi Marsha2306, is the pain and numbness limited to your hand?

I have read that transverse myelitis does not react well to narcotic meds. I don't know if a synthetic (or semi-synthetic) such as oxycodone would help with the current pain.

For the longer term look up LDN (Low Dose Naltrexone) which is recommended for autoimmune conditions. (Should help with your RLS too). It is not yet FDA approved, but doctors in the US may be willing to prescribe it off-label or you may be able to buy it from a compounding chemist. It is cheap and not profitable for the pharmaceutical companies.

To get this horrible disease from a flu shot is so unlucky. I hope you recover fully and in a reasonable time.

Neil

[marsha2306 in reply to Neil46]

It is now limited to the thumb and forefinger and the worst part is the pad below my thumb (burning, pain, numbness. Initially it was my neck, upper arm and hand. I’m seeing yet another doctor at Hopkins on the 20th (my 3rd neurologist) who is a neurologist/immunologist. We will see what he has to offer...

[Neil46]

Hi Masha2306, there are tests the immunologist might perform to look for antibodies to the brain, (eg Synapsin) and CNS caused by or exacerbated by the unfortunate flu shot. You will probably have found out that myelin is the wrap that coats your nerves in both the brain and body. (like the insulation around electrical wires). If you have an elevation of myelin antibodies this coating is compromised and the messages sent through them may be distorted. Hence numbness, tingling etc.

I have only found this out in my amateur research into RLS neurotransmitters and autoimmune diseases. I am absolutely not an expert!! but I have found methods that have helped others.

Good Luck with your visit on the 20th, please let us know how you get on.

Neil

[marsha2306 in reply to Neil46]

Thanks for your input! I will let you know.

I do remember that when i had the EMG, it showed which nerves were affected.