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Old 08-18-2015, 12:43 PM #1
LLSR LLSR is offline
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Join Date: Aug 2015
Posts: 4
8 yr Member
LLSR LLSR is offline
New Member
 
Join Date: Aug 2015
Posts: 4
8 yr Member
Default New here and would appreciate feedback...

I’m hoping some of you might be willing to read my story and respond with your thoughts.

A few weeks ago, my muscles began fatiguing very easily. I’m fit and active, but suddenly running up one flight of stairs would make my thigh muscles burn and leave me breathless. Things that didn’t tire me out before (taking a walk, going for a hike) now fatigue my muscles and leave me stiff and sore for days afterward. Using my hands for just about anything (drinking from a heavy water bottle, drying my hair, typing, holding my Kindle for any length of time, etc.) fatigues my forearm muscles to the point that they shake, and sometimes even my biceps and shoulders. My right arm is worse, but that may be because I’m right-handed and use it more. Sitting a certain way might fatigue the muscles in my back. While I’m not having any issues with choking or difficulty swallowing food, sometimes the muscles in the front of my neck and throat feel tired and very “thick,” for lack of a better description. Sometimes the muscles in the back of my neck feel fatigued simply from holding my head up. After I fatigue a muscle or group of muscles, they will be stiff and sore for a few days, like I went to the gym and overdid it. I am still able to do my normal activities, they just fatigue me. In addition to the muscle fatigue, I feel generally exhausted every day.

With the exception of the hands/forearms, which pretty much always feel fatigued, the symptoms in my other muscles vary from day to day. Some days I feel fine, other days every muscle feels easily fatigued. Most days I have residual stiffness from muscles I’ve fatigued in the previous days.

I don’t have any facial or ocular symptoms, at least as far as I can tell. I’m not having any noticeable respiratory issues, either.

As a side note, I have recently been diagnosed with an undifferentiated connective tissue disease similar to lupus. My ANA ratio is 1:1280, my WBC is low, I have a history of DVT (blood clot in the leg), and I have Raynaud’s. These all point to lupus but you need to meet four criteria for a diagnosis and I only meet three. All other bloodwork was normal except my Vitamin D level was borderline low. I bring this up because I know it is not uncommon for people to have MG and another autoimmune condition like lupus or RA.

I saw a neurologist last Friday. He ordered an MG panel (I don’t know exactly which tests, although one included “potassium channel” in the name). He said the samples are sent to the Mayo Clinic, so it takes a couple of weeks to get results. He also order an EMG, which is scheduled for three weeks from tomorrow. He did not order a single-fiber EMG. After doing a bit of research and learning that the SFEMG is the mother of all tests for MG, I asked him to explain why he ordered a regular EMG. He said the regular EMG rules out a lot of other things (e.g. ALS) and if the MG blood work is positive and other things have been ruled out, there won’t be any need to do the SFEMG.

Based on the above information, I wanted to get some thoughts on a few things:

1. Do my symptoms sound like MG?
2. Is it typical for them to vary in intensity from day to day?
3. Did any of you start out with widespread muscle fatigue but without facial, ocular, or respiratory symptoms? That seems like an unusual presentation.
4. Does my neurologist’s approach seem reasonable?
5. Any other thoughts?

Thanks!
LLSR
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