Does anyone else have back pain from muscle spasms due to being weak? also was anyone ever tested for mg negative but retested as the disease progressed and tested positive?

Yep, I get lower back pain - not necessarily due to back spasms, but when my lower back muscles, upper leg muscles and stomach muscles (abs) get weak - due to myasthenia gravis.

Remember, MG affects the proximal muscles - the muscles closest to our torso.

When the MG weakness kicks in, it causes extra strain on my lower back muscles, because I am not being supported correctly by the muscles mentioned above (and probably others), resulting in back pain (often severe). I end up not standing or walking completely "upright". (My body compensates for the weakness and pain by not allowing me to stand upright).

(Think cave man lurching forward a little bit). Altho I guess I should say "cave woman" - or "cave person". LOL

I have had MG for a long time - diagnosed in 2000 - altho I believe I had it before then. For quite a while before my diagnosis I would wonder why my lower back seemed weak, and hurt, after standing for a short while, for example while cooking or washing dishes. I thought I just didn't like household duties! LOL

Today, even with MG meds (mestinon, prednisone and cellcept), and a modified lifestyle, I occasionally have this severe back weakness and resulting lower back pain. Usually this occurs when I have "overdone ", or MG is exacerbated due to illness or who knows why, perhaps a dose of mestinon is due, or sometimes when I have been in extreme heat (hot weather, room full of people - without air conditioning, etc.

MG is very unpredictable - even when on a good medical protocol.

When this pain, and "leaning forward" stance occurs, it is time for me to sit or lay down and rest PRONTO !

As far as MG diagnosis, I have been on the diagnostic Merry-Go-Round, like so many other MG patients.

"Yes"

"No"

"Atypical MG"

"Yes, Maybe - Let's get that Single Fiber EMG to Quantify"
BINGO !!
Single Fiber EMG was positive for MG. (I never ever thought I would love to be tested with a bunch a needles) but I am so grateful for them!

(I am sero-negative)

I have been a "Snowflake" (MG is often called the Snowflake Disease) - ever since the positive Single Fiber EMG.

So, rest when you have the back pain (e.g., get off your feet). If the pain is due to weak muscles from MG, resting will probably help you.

Good luck with the diagnosis. Seems neuros are VERY careful (and sometimes - they are often extremely reluctant) about confirming a diagnosis of MG.

One neuro might say yes - while another one might say no. Why? I guess because they can!

Well = Perhaps because they don't see very many patients with MG. And perhaps because they just don't know very much about MG.

(I had to change neuros due to a change in insurance and boy did that cause me problems!!!!)

I was initially tentatively diagnosed by my endocronologist (droopy eye and double vision was the first indicator) - who sent me to a Neuro-Opthamologist who was POSITIVE I had MG - yet it had to be "proven" scientifically to the neurologist(s) who eventually became the "managers" of my MG - or (in the cause of one neuro) - "whatever" it was that was causing my symptoms.

Sorry for the long response.

But I thought you might appreciate all the information you can get about MG. I am a believer in that it helps to know the "Big Picture".

My back gets weak between the shoulder blades. I actually had to go to the ER because it felt like the wind was knocked out of me every time I moved my arms in front of me to lift something. I was told it's a rhomboid strain, but this happens quite often. I take generic mestinon and it helps a lot.

Years back I tested positive, then the next test was neutral. There were a couple of negatives through the years and now it's positive again. I'm not sure if the tests came back negative because I used to be a heavy caffeinated soda drinker and caffeine works as an anti cholinesterase like Mestinon. I only drink tea maybe once a day now when I feel the Mestinon wear off too quickly. So, that may be the reason it's positive now.