Interesting! I am so excited that I can come here and get such great input! Thanks!
As for tests, I had a 'Myasthenia Gravis Panel' blood test done and was told it was negative..I am going to ask my rheumy for the details so I really know what was done.
Next week I have an MRI of my brain, and another of my spine. I'm anxious to see what they show, if anything. I've had an echocardio thing done on my heart and it looked great. Had that done because of a weird episode I had where my usual muscle spasms seized up hard around my ribs but led to me having chest pains and difficulty breathing. Flexeril didn't help at all.

And then on April 4th, I've got an EMG muscle test scheduled.
I've had a history of odd breathing problems that crop up every so often, even leading to pulmonary tests & xrays which frustratingly never show anything. My 'bubble wrap sticking' sensation that I have in the bottom of my lungs sometimes drives me nuts! I hate it, yet nobody can ever see it on an X-ray.

I have definitely been diagnosed with Sjogrens and CFS, and bny806, Plaquenil helped my weakness and joints at first too. But nothing has really made a huge enough difference to where I can do any housework or walk up stairs well.
And my muscle spasms have gotten worse..except very recently while on Prednisone.

Benedryl makes me feel so gross, too! My legs and back get the creepy crawlies bad..like restless leg throughout my body. Weird!

bny806, you asked if they did a ck on me. Do you mean a check for Sjogren's, or something else?

And AnnieB3, at first they thought I had Lupus, but ruled it out with tests. They looked at Fibromyalgia, but I don't have pain as much as extreme weakness. I'm pretty okay if I'm still, but any exertion is awful.

Thanks again to you all. Sjogrens only explained things to a certain point. What I'm learning here from you all makes me think my Neurologist is on to something because MG seems to answer a lot of questions.
Thanks again!

crmak- interesting!!! I get the creepy crawlies too!! I have documented non length depended small fiber neuropathy (epidermal nerve biopsy was "significantly" abnormal").. sometimees I cant tell if its my muscles vibrating or my skin crawling - can't tell the difference!! I have heard people on here with MG talk about that sensation when they get overly weak and tired.. It worsens the more I use an extremity usually

My neuro did a test that wasnt' initially on the panel that came back a 20 (and normal is 0-20) which made them curious.. it was the acetocholine modulating antibody I believe... ..

ck, as in cpk.. which is a measure of muscle breakdown- MOST of the time people with myositis, some myopathies etc will have elevated results.. MG won't (not that I'm aware of anyhow).. if it comes back elevated then they do a muscle biopsy many times.. people with LUPUS can have polymositis, and i'm sure sjogrens also increases the risk as well..

Keep us posted on everything! Hope you get some answers.. and good answers!

Shelly (thanks for that), Do you ever get rashes, like to the sun? If so, have they been biopsied? Sometimes SCLE can present with only a rash and possibly Anti-Ro AB's. Which lupus tests did they do?

When I'm in between doses of Mestinon, my throat can get dry and it can feel sore on occasion. Without enough acetylcholine, your mucus membranes can become drier.

Yes, those sound like MG symptoms. I echo what bny said about the CPK and polymyositis. Did your doctor do that test?

It's possible that they didn't do the MuSK antibody test. You should get your records to see if they did.

I hope you get answers soon.

Annie

Hi, the tight squeezing chest symptoms sound like the "MS hug.". Is the brain MRI to rule out MS, as that isn't a typical MG symptom? Also, the severe restless legs and crawling sensations are very common with MS. You might want to run your symptoms by the folks on the MS list. They are very helpful and caring.

Good luck.

It sounds as if the brain MRI will help point you in one direction or the other (MS or MG). Although for perspective, when I started experiencing restless legs, I researched and was able to confirm it can be a symptom of MG. The chest pain I've had ranges from flickering pains in muscles of the ribs and sternum, pain at the top point of inhalation, and eventual spread and intensity of pain to the point it felt my chest was being crushed. So I'm curious whether that's similar to the pain you've experienced or if it was more along the lines of the 'MS hug' which people describe as a boa constrictor squeezing band sensation.

I also have twitchy legs and a chronic "bear hug" that nobody seems to be able to explain. I had an MRI about 2 years ago and it was ok. I wonder......

I have tightness in my chest that I always attribute to pectoral muscle weakness. I can tell how bad a day will be by the deep grooves near my nose and lips. Sometimes they are only on one side, sometimes they are really deep on both side.

kathie