[AnnaMarie]

I was wondering if this is a problem for myasthenics. The muscles in my legs and arms burn a lot, in fact a little too much. I can get up from bed and walk halfway around the room and my leg muscles will be burning. It's mainly in my upper thighs and calves. It happens in my arms as well. Is this "normal" for MG or should I be concerned?

[AnnieB3]

"Burning" is not normally an MG thing. It makes me wonder if you have lactic acid building up. Write a note to yourself to ask a doctor to check your lactate and pyruvate. And when was the last time you had a comprehensive metabolic panel (to check kidney and liver function) and a UA?

http://emedicine.medscape.com/article/167027-overview

Don't read that now. You need to rest. If you feel worse, just go into the ER or dial 911. Don't get too worried - stress doesn't help anything. You sound pretty calm to me though.

Annie

[AnnaMarie]

When I first started having muscle weakness I came across Polymyositis. Honestly I thought that was what was wrong with me. A lot of the muscle disorders have the same symptoms so it's basically a matter of ruling out things. I know PM can only be diagnosed with a muscle biopsy and that burning muscles due to inflammation is a symptom. I wasn't sure if it was for MG or not.

When I told my Neuro about the burning muscles he mentioned lactic acid and getting a biopsy if Mestinon doesn't work and MRI comes back normal. I looked through my med records and couldn't see any testing for lactate and pyruvate. My last UA was in February and everything was fine. My last metabolic panel was also done in February and everything came back normal as well.

When I first went to see the Rheumy in 2010 they mentioned that my kidney function was up which is why they thought I might have had SLE but it's been normal ever since. My SED Rate, CPK and CCP have been slightly elevated but I was told by Rheumy that it wasn't high enough to point to anything specific and that sometimes it's normally elevated in some people. I'm African American and have read that some of these tests are little more elevated in my race than in others.

My Neuro was a little concerned since they were elevated so rechecked them in April. He said the numbers were around the same, elevated but not extremely high. That's been a problem for me since 2009. Either everything comes back normal, or the tests are a little above normal but not enough to worry or warrant any kind of diagnosis.

Also, I've never been sick before in my life. I've read stories from people where they have a long history of getting sick and being hospitalized. I barely even got colds when I was growing up. So this hit me really hard because I've always been active. I'm coping though and not stressing. That's not going to do anything but make me sicker. Thanks for your help.

[AnnieB3]

AnnaMarie, With all of your symptoms, plus the elevated ESR, CRP, CCP and CPK, I think it's time for you to find a better rheumy! If you combine that with the fact that you're an African American woman, I would highly suspect a rheumatology condition(s).

I volunteered at the lupus foundation here for 10 years. What I know of lupus and other related diseases is that they come in all variations and they don't simply "scream" at you but can be insidious. And they can take awhile to come on but then can suddenly get worse.

Do any of your joints hurt or are they swollen or red? Have you done a symptom log? What's your temp like on a regular basis? Have you checked your blood pressure?

Have you checked with the national or a local lupus foundation to find a good rheumatologist? I'm really surprised they didn't do more, especially with you having a positive CCP. Why didn't they even do a scan to check for degenerative changes or arthritis? And, if I might ask, how old are you?

You may not have MG but if I can help, let me know. The lupus board here is slow but there are others out there. I'm not saying you have lupus but it sure sounds like an inflammatory disorder of some kind.

Do you ever get a rash when exposed to the sun?

The bottom line is that something is going on and you need diagnosis and treatment. If it is an inflammatory disorder, they can be VERY destructive if not treated early. I hope you get someone to take even "slight" elevations seriously. It doesn't take much to cause damage.

Annie

[AnnaMarie]

I tried to get a second opinion from a rheumy but can't find one that takes my secondary. On top of that the rheumy I have now is leaving state and there isn't one that's going to be taking his place so I'll have to contact my insurance to see who takes it.

I've never had any swelling in my joints even when I was having joint pain. It's all muscle weakness now. I've had x-rays of my hands and they all came back showing no changes.

I used to keep track of my temperatures and on occasion have had low-grade fevers but both my family doc and rheumy said that it was nothing to worry about so I stopped checking my temp. I do keep a symptom log. I also have high blood pressure and am on meds for that.

I haven't checked with the Lupus foundation. My ANA has always come back normal. I know that there's seronegative Lupus but I think my rheumy has pretty much ruled that out especially since I'm not having pain anymore.

I'm 36 years old. I've never had rashes when exposed to sun. I've had rashes though and they jumped around. Mainly on my hands and feet, never anywhere else. I went to Derm and he said it was eczema. I told him they don't itch but he didn't listen. He prescribed some cream which I never took because the rashes always went away on their own. I haven't had any problem with rashes in a few months. I've never had a butterfly rash.

[teresakoch]

Ask your doctor to run a Celiac Disease screen (blood test). The rashes might be a form of Dermatitis Herpetiformis (the "external" manifestation of CD).

It wouldn't necessarily explain the muscle weakness, but a gluten-free diet might ease some of your other symptoms (some people test negative for CD, but are still gluten sensitive).

Many of the MG'ers on here have found a GF diet to be beneficial - it's pretty easy to do, once you know what you're doing.

[AnnaMarie]

Thanks teresakoch for the info on Coeliac and rashes.