Hey Gomicho,

Sorry to hear of your symptoms and the difficulties you've had obtaining a diagnosis and treatment. It's interesting that you only experience symptoms in your arms and not your legs.

Have you had a lumbar puncture? Has anyone considered immunoglobulins as a possible treatment?

Best wishes,

Atty.

Welcome gomicho.

gomicho, welcome!

I'm stumped too. I was going to say that anything you might be taking, like the melatonin you mentioned, might be causing your problem but you've discussed why you don't think that it is.

This may seem ridiculously obvious at this point but have you thought about what you typically do during a day? Is there an activity where you use your arms or upper back?

I had similar symptoms when I used to knit, for instance. I wasn't knitting intensively either--just a little each day.

Sorry I can't come up with any better answers for you.

Hey Gomicho,

Something you may wish to explore is a mitochondrial disorder of some kind. The Chronic Fatigue Syndrome blog/website Health Rising is an excellent resource with respect to this.

Something else you may consider is Mestinon a drug for Myasthenia Gravis. Using it off label may be appropriate for you, certainly worth exploring.

mestinon for pn?

A Mestinon Miracle: Vagus Nerve Stimulating Drug Helps Long Time ME/CFS Patient Exercise - Health Rising

Do you have any weakness in your legs at all or is it purely your arms? And is it only some muscles? And do they ache, hurt, get tired simultaneously?

Best wishes,

Atty

You might explore our TOS forum and the sticky threads above it..
TOS can be a tricky one to get a clear dx.
Drs like clear cut tests or maging for proof, but some TOS can be soft tissue based.

Did any PT or DC try -
Top rib mobilisation
Manual trigger point release
Ultra sound
Low level laser
IFc stim

How is your upper body alignment?
Head forward, shoulders hunched or rolled forward?
Are shoulders, hips., Knees level across?
I hope pt and dc checked those. But just checking for sure . If not.. Seek better ones .

Many in the past had trouble being treated and diagnosed with TOS until they had increasing pain and symptoms that required rx meds or surgery..
I would call it pre TOS, a point where it can be turned around with expert treatment and self education , floow thru with self awareness.
It took me yrs but could have been less if not for work comp delays.

Even a long ago whiplash or shoulder, neck minor injury can cause issues as we age..

So there was a period of time when one of the doctors thought it was TOS . All mri, nerve testing, angiogram came back normal (but I know this doesn't mean anything). But after two rounds of scalene botox with zero improvement, the doctor said he couldn't diagnose me with TOS. Definitely tried physio and rmt for TOS (rib mobilization and all), but no improvement...

Some aches and pains in the arms for sure. Usually they feel very tired, weak, and heavy with tingling and electric shocks. No pain in the legs... I will ask about mestinon to my doctor at my next appt! Thanks for the info!

Nope, no obvious activity I can think of...

Not yet. I really need to find a doctor who is willing to explore all possibilities, but so far, no one showed any interest in helping me. In fact, all the tests and imaging were done by my insistence after I did research. I've seen neurosis, physiatrists, and general docs, but all they keep saying is they don't see anything wrong with me... that's why I was hoping to find someone here who is maybe from Vancouver and had any luck with a doctor...

Did you ever get tested to see if you have narrowing of your spine in your neck? I had the same symptoms as you in my arms to only find out I have narrowing in my neck that was pressing in nerves in my neck. I also have a host of other things wrong with my cervical spine and my Lumbar spine that gives me neuropathy never pain in my arms and legs. Get your neck and lower spine checked out many different things wrong with your neck and spine will cause arms and legs to tingle, picking, numbness, burning, pins and needles. Some people do not have pain in their neck or lower spine, but pain in their arms and legs. Hope this makes sense and helps you. I have the pain in my arms and legs real bad right now, trying to get my primary doctor to send me to another back doctor, first doctor did an operation on my neck it helped for a while now it has come back and worse, the back doctor said it is not bad enough to do an operation on my lower spine and said nothing more he can do, but neurologist said their is something that can be done and get a second opinion. Also the neurologist said I was taking to many psychiatric drugs for pain due to neuropathy nerve pain. I am taking, Amitriptyline, Gabapentin, Cymbalta, bupropion. Also taking Ibuprofen which is not a psychiatric drug and Cilostazol for pain which they thought I had Peripheral Artery Disease, it is supposed to help with pain due to low blood flow in the arms and legs.

Those pain medications do not help me I can barely sit for 15 minutes before the pain hurts so bad, I have trouble sleeping and my arms hurt like crazy.

My advice would be to go see a back doctor, to rule out any back or neck problems and make sure you always get a 2nd or more opinions, when one doctor says we can't find anything, another doctor might see something others did not see and say right there is your problem.