I'm looking for information about diagnosing MG. I have a number of weird auto-immune/ fibromyalgia things going on, and a neurologist told me MG is ruled out as a factor, based on a negative chest x-ray, negative EMG, and neg anti-ACHR test.

But when I am tired or flaring I have:

• difficulty swallowing (no prob with liquids, it just feels like food won't go down easily, and I kind of work to push each bite down.)

• double vision (I have difficulty controlling both tracking muscles and focusing)

• muscle weaknesses when I am tired (it feels like I can't hold my head up, and I have to raise my eyebrows to keep my eyes open). My kids and neighbors warn me when I start to get too tired, even before I feel it. They say my face kind of droops, especially around the eyes.

• Hoarseness (one of the vocalis muscles doesn't close -- but only when I'm flaring)
• Shortness of breath when fatigued

Once the panting started I had a spirometry test done, that showed mild constrictive ventilatory defect. But on follow-up it was back to normal. The pulmonologist said I must have just been too tired to inhale fully for the first test.

Now I find my tongue gets tired if I speak for too long, and I start to have unclear diction.

Should I trust that we really have ruled out MG? I feel weird asking about it, since no one seems to think it is a possibility. And I have been off and on sick fairly continuously since 2003, so maybe I'm just grasping at straws here. I haven't had a single-fiber EMG, and I would rather not, as I found the regular test quite distressing (maybe the fibromyalgia ups the pain.) Also, I tend to be a little too passive about presenting my complaints, and bugging my Docs... Any advice or ideas?

Thank you. It is really wonderful that this site exists, especially for folk like me who live in a rural area .
--Shari

Good morning Shari. Everything you listed is what I experience every day. I have had Myasthenia Gravis (MG) since 2000. I had all the standard type of tests you had, which showed nothing. What confirmed my diagnosis was a single-fiber EMG in 2002. I am not a doctor or an expert regarding this medical condition, but, if I were you, I would get the single-fiber EMG. Sure it was uncomfortable, but now I have a diagnosis. And with a proper diagnosis you can get better care.

Best of luck. Keep me posted.

Shari, I agree totally with Cindy! I was diagnosed in the mid 70's by an MG specialist, but in recent years have seen 2 neuros who wanted to take away my diagnosis because I am sero-negative, and EMG negative.
All of the symptoms you mentioned are most definitely MG symptoms. My hubby could always tell when I was especially fatigued because of my "half-mast eyes", as he called them. When my neck muscles fatigue, I feel like I need to use my hand to hold my head up. I also choke when fatigued, but in my case it is more likely to be on my own spit first, then possibly on a liquid. I very rarely choke on solids. If I do choke when eating, it is usually the spit that goes down before the bite that causes the problem.
If you can locate an MG specialist, you will be better off. Most neuros just don't know much about MG. And having a SFEMG is a good idea, but even it is not 100% positive. I have read of MGers that are negative in everything, but were diagnosed on symptoms and their improvement on Mestinon.
And as far as the negative chest Xray goes, not all MGers have an enlarged thymus. At least, I assume that was why you were given the Xray. I googled MG and thymus and gleaned the following info: "Computed tomography (CT) or magnetic resonance imaging (MRI). These tests can help identify an abnormal thymus gland or a thymus gland tumor." If it takes a CT or MRI to identify an abnormal thymus, I'm not sure what good an Xray would do.
Unfortunately, knowing you have all the symptoms of MG may not do you much good if you are stuck with this doctor and he is convinced you don't have it. Sometimes if you start looking for another doctor, they figure you are "doctor shopping", looking for one who will give you the diagnosis you want.

Thank you, Lois. I'll start scanning the literature to see whose names come up as MG specialists. And not to sound like a baby, but does the SFEMG hurt more or less than the reg EMG?

Thank you, Cindy. I saw in another post that you are retired now. How are you handling it? I also am not working anymore, both because of the fatigue and the loss of my voice. I appreciate not having to work when I don't feel well, but I definitely miss it when I am having a good day. If I ever get to a point where my activity budget is predictable, I hope to start volunteer teaching or tutoring.

Anyhow, I'll follow up on your advice...
--Shari

Hi Shari -
It seems hard to get a diagnosis for this disease and then once you have own you wish you didn't! I thought the SFEMG was far less painful than the EMG. When I had my chest xray they said it was normal - then I had a CT Scan and it was normal - then I had a thymectomy and they found a huge thymus growing up into my neck pushing on my vocal chords. Apparently thymic tissue is difficult to see - the CT scans aren't always accurate. I hope you get some answers.
Gabe

Shari, I am really enjoying retirement. I can now rest whenever I feel the need. I don't have to push myself to do this and that. I did like my job and the people I worked with. And yes, when I am feeling very good, I think I could work again. But then, reality sets in and I know better.

I am now enjoying spending more time with my family and we have a grand child we babysit. Life is good.

Take care.

Shari, I've never had the SFEMG, just the EMG, and it was not TOO bad. Though not something I would look forward to having to repeat. I think the SFEMG can be painful depending on which muscle is used. Gabe, I was interested to see you experienced more pain with the EMG. What area did they use for the SFEMG?
Hugs,

Hi Shari,
The only thing that I would add is maybe try the Tensilon Test. It's how I was diagnosed. I've also read that the blood tests can be negative one time, and then positive another. There really isn't anything normal about testing for MG. Unfortunately, there are also many many other autoimmune/neuromuscular diseases that can cause these same symptoms. So for some, it can take a long time to find out what is going on. Limbo land is the worst!! Sorry, you have to be in it right now.
I would seek out a Neuromuscular specailist, or someone who had dealt with MG before. Read as much info as you can, and if you need to , write down questions to ask. Most doctors are willing to answer them. If he has a problem answering them, or gives you an attitude, go to someone else. You don't need that!
Best Wishes

Hi Lois,
I had 3 SFEMG's - the first one was in my forearm, the second in my forehead/eyebrow and the 3rd one was done in both my arm and forehead. They weren't pleasant - and I had three different doctors do them - I think it is very dependent on their experience (both results and pain) and the equipment they use - but I found all three to be less painful than the EMG's...Maybe I am weird (oh that's right, I know I am)!!!
Gabe