I was hopping some of you could help me.

My symptoms (over a period of 3 years) started with fatigue (disabilitating fatigue), and I noticed that it was hard to keep looking slightly up (a little above horizontal). Later my muscles began to feel like they were being tightened and I noticed holding my arms straight out was beginning to be difficult (muscles too weak).

Next my neck started hurting—hard to hold up head. Sitting is the worst. Found relief from a neck brace. Pain is difficult to describe, but kind of burning and pulling is the best I can do. The pain now goes all the way to my fingers. Now starting to have problems with double vision. It happens mostly at night when I’m tired.

Been to a Neurologist and Rheumatologist. The Rheumatologist happen to give me prednisone for what he wondered was PMR. I was on 60 mg of prednisone for about 7 months. Felt almost normal. Doctor took me off prednisone because he decided I didn’t have PMR.
I have had the blood test for MG, but it was negative. My eye doctor thought that I should try Mestinon. My PCP ordered Mestinon 60 mg 3 times a day. It seems to make some pain worse, but the muscle weakness “may” be a little better.

What do you all think? Are my symptoms anything like those of you who have MG? I need to find a Neurologist who knows about MG.

Welcome Semendua,

What you describe sounds like classic MG to me.

Did you have the blood tests while on prednisone? I hear that they can be negative while on steroids (false negative).

Of course you can still have MG with negative blood tests as there are antibodies that haven't been identified yet. This is called Seronegative MG.

The fact that you felt much better in terms of the weakness while on the prednisone would definately point a finger towards MG as well. 60 mgs is a pretty typical dosage of steroids strong enough to keep MG at bay.

I hope that you can find a good neurologist who will diagnose you quickly as I know that the symptoms can be so disabling!

Good luck
Nicky

Thanks for your reply. I wish I could have a diagnosis—it’s hard to keep going for years, having Docs always giving “that look”.

I’ve told Docs that I felt like prednisone “saved my life” but they usually say, “everyone feels great on steroids”.

I was on 60 mg of prednisone when I was given the blood test for MG.

A side note; I found by chance I was Vitamin D deficient (15). Two doctors didn’t seem to care too much about it. They did give me 50,000 iu /week of Vitamin D2. After 8 months I asked to be recheck and the level was the same. Three Doctors didn’t have a clue why the level stayed low. After researching on the Internet and finding the site vitamindcouncil.org[/url], I went to a health food store and purchased Vitamin D3. I have had a huge increase of energy and my level doubled in only 10 days. I read lately that low Vitamin D has an impact on MG.

Hope that others could let me know if my symptoms are typical for MG or not. Thanks!

One other thing i forgot to mention, if I push on my sternum, it hurts. Docs just give me “that look” again. One said that there is cartilage there and that it could be inflamed. I had wondered if it could be caused by my thymus.

Oh ya, I hear you. I've been going for years too. I know "that look" like the back of my hand!

Your symptoms sound mg-like except for the pain. There's a lot of disputing the pain issue, with neuros saying no pain but some patients complaining about a lot of pain. I definitely have had pain associated with other muscles trying to compensate for weak muscles particularly in my neck and upper back. My posture is terrible and has been for years, I just can't seem to hold myself up anymore.

I hate to tell you this, but 1 neuro is a drop in the bucket. I've been to 7 and am still trying to get a diagnosis and prednisone even though I've twice tested positive on the antibodies. I don't know where you live but you may be near an mg specialist which would be great. As for the antibodies you should definitely be retested. Make sure that it gets sent to the Mayo lab. I can send you a link if you like. I had my son's pediatrician send his there and it was no problem. Even your gp could do it.

I started off with extreme fatigue too. Looking back on it, I think that was caused by weak breathing muscles (which I didn't really put together since I thought the shallow breathing was caused by something else - maybe a heart problem since my heart was racing full time even lying down). That combined with severe sleep apnea, also from the same cause, also unknown to me, was causing me to sleep about 18-20 hours per day. I would have slept 24 if I could have. Even when I wasn't sleepy I had this horrible, horrible exhaustion like I had a black hole inside of me. Ugh, I still get that.

I wish I had a magic answer for you, but I don't even have a magic answer for myself. All I can do is encourage you to not give up. If you're like me, slugging on through all the sickness and exhaustion for yet another few years is daunting and overwhelming. Still, you have to keep picking yourself up and trying again and again.

Ally

Hi Semendua,

I agree with Ally that MG doesn't really cause pain, but the compensation that the working muscles have to do does. The areas where you experience pain are exactly the same areas where I have pain too. I also have had terrible posture for ages, like Ally says, and find it really difficult to hold up my body. I'm sure it's the cause of my lower back pain.

I had developed this habit of keeping my shoulders very upright, almost like I've been hung from a hanger, to help with my breathing. I always keep my left hand on my hip whenever I'm standing for long periods of time. I don't really know why I do this, but it just makes things easier for whatever reason.

It's so funny how we do things so unconsciously to assist ourselves with our moment-to-moment existence. I guess the weakness can be that insidious and sneaky; that it bypasses our sense of computation until hinesight puts the pieces together.

The 'burning' pain you describe is a bit iffy. I have had burning sensations in the palms of my hands and feet, but I'm pretty sure that wasn't related to MG but something else. I still occasionally get the burning sensations in my feet.

Thanks for the info. re. the vitamin D. I agree that so many people with immune system issues/chronic illness are low on it. I also take the D3 kind, but I'm not even sure if I have a deficiency (but I prolly do). I take it 'cause of the prednisone.

Your sx really do sound like it, especially with the DV late in the evening. Ages ago (like two years), when the fatigue that you guys had also described was killing me and I found myself wanting to be in bed all the time, I'd be reading my thyroid bible (I truly believed at that time that my thyroid was the culprit in my feelings of sickness), and I'd come across the part that talked about other diseases associated with thyroid disease.

I'd get to the part about MG, which was barely talked about, and I'd never heard of, and it briefly described the sx. One was the DV. I'd have one eye closed while reading because I couldn't see clearly without doing this- everything would be double! A thought occurred to me that maybe this was what was wrong- but I was like, 'nah...couldn't be!'

It didn't mention anything about fatiguability. It did mention 'slurred speech,' which I didn't have at that time. So go figure that the DV disappeared and my most persistent sx, slurred speech, is the one I'm willing to take prednisone and imuran to get rid off today!