Ruling out MG
 

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. :D

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

Gabe, excuse me for asking this if you've already posted it somewhere else. Brain fog has really got me tonight. :D Why 3 SFEMG's by 3 different doctors? Were all 3 negative? Positive? I can't even remember if you've been diagnosed MG or are in limboland.
Hugs,

Hi Lois... My diagnosis story is long and tedious but here goes:
In June of 2002 I had a hysterectomy - during the surgery they accidentally cauterized my ureter (tube from kidney to bladder) - I had 3 procedures and then reconstructive surgery to correct the problem in October of 2002. I never felt completely well following the reconstruction - and then started having trouble with my vision about six months later - had an MRI - had Optic Neuritis - was referred to a neurologist - my vision eventually improved and he repeated an MRI to rule out MS and sent me on my way. Then in May of 2003 I started having difficulty swallowing, having difficulty with speech - cleared my throat incessently and went to the primary doctor. I had also noticed that I was having difficulty on the stairs - my legs would get weak before I got to the top of a flight of stairs. My primary doctor tested me for Lymes Disease - test came back positive but then when they did the more specific tests they came back negative. She then tested me for MG - the binding AChR came back positive. She reffered me back to the neurologist - he repeated the blood tests and the binding and modulating came back positive. He is not an MG expert but prscribed Mestinon and started me on Prednisone - about 6 months later he added Imuran. He referred me to a specialist at the University for consultation regarding thymectomy. The "expert" said I had a classic case of Myasthenia and should schedule the thymectomy. He scheduled a SFEMG to measure the level of weakness...He did not tell me to go off my medication so I was taking Mestinon, Prednisone and Imuran. The SFEMG was normal. He then decided I needed to be off the Prednisone and did a fairly rapid taper - over the course of about 6 weeks I went from 40mg to nothing - I had the second SFEMG (a different doctor performed the test) about two days after stopping the Prednisone and had been off the Mestinon for about 12 hours. It was normal. He also did a muscle biopsy and it showed muscle atrophy which he attributed to Prednisone. He told me I was fine and that there was nothing wrong with me. I asked him to put that in writing, to stop billing under the Myasthenia Gravis code and to give me a referral to a Psychatrist...he referred me to Mayo Clinic for a 2nd opinion (really my 4th opinion). I checked into a hotel with my 4 sisters stopped taking the Mestinon ( I was off the Imuran and Prednisone for about six months by the time I got in to Mayo). I was off the Mestinon a little more than three days and had my third SFEMG and it showed a lot of abnormal jitter and blocking so I have a confirmed diagnosis of MG - Had a thymectomy in April - get IVIg every two weeks - take Imuran and Mestinon. Crazy...
Gabe

Thanks, Gabe. I appreciate the detailed info. I may never be in the position to need, or even have access to, a SFEMG, but I will certainly benefit from your information and experiences if I do. I'm 'between' neuros myself, and will probably not go back to another one unless the MG worsens drastically. At the moment I'm at a point where my GP and Mestinon are keeping me going. If I do need to ever see another neuro, my GP has said she will try to find me an MG specialist.
Hugs,

Gabe
 

Y
Oh Gabe,
You are so blessed that tapering that Prednisone that fast didn't cause you any kind of serious ICU type medicaol emergency. Wow.. You sure have gone through the mill.
Do you feel any difference since having your thymus removed? I read it can take years, and still have to be on some type of medication, and then I've heard of others who after a couple years noticed that they had been improving very subtle and then it hit them just how much they had improved.
I see the neuro muscular specialist in a couple of weeks, and I was hoping to be started on Cellcept, but now, I'm not so sure they will because of the latest study. My body can't go through an operation right now, so they won't do a thyectomy on me.
When I took the imuran, it made me sicker than sick. I truly thought I was going to die. So now, I'm a little afraid to try too many new drugs.
Love lizzie

Hi Shari
 

Sorry that your in limboland :(

I had a SFEMG done on my forearm and my thigh muscle, both were negitive. I've since read that in order for it to have any accurasy, its suppose to be done on a facial muscle. There was someone on the obt that had a weak eye, so when she got to her appointment she sat and read. After 20 min of reading her eye was defenitly droping, and when they did the SFEMG there, sure enough, it was positive for jitter. I think that someone should really try and exercise as much as posssiable before any testing is done. Even the first blood test that I had, the doctor who ordered the test, he didn't think I had MG, but told me to go and do at least 20 min of exercise before the blood test. I did and it came back borderline. The last test I did, I didn't do that. In fact it was a 5 hr drive for me to see the dr and so I was really rested, this was not a good thing. :rolleyes: I've never had a dr test strength and this is what is not ever tested from other dumb neuros.

SFEMG hurt, but not as bad as the EMG test :eek: They basically stick a needle thats hooked up to a wire into your muscle and then ask you to flex and relax the muscle. Its not that bad, but stick it in your facial muscle, well........ maybe not.

There are other reason for the symptoms that your having, MS being one, this is were I started, and still doing. Hopefully one day they will know whats wrong and well maybe have something to fix the problem. Until then I try and do things for myself, I changed my diet, and that helped emmensly as well as adding B12.

I hope that you keep reading and learning, really you are the only one that can help yourself. Doctors only are suppose to be helpful guides, although some think there gods. :rolleyes: Take care, Patricia :)

hi Lizzie,
My swallowing has improved dramatically since my thymectomy. The thymus gland was growing up the left side of my neck and since they removed it things have been better. My arms and hands continue to have weakness and my swallowing is still affected. I haven't had a "remission" and don't know if I will but it was worth a shot. I think the thing that has helped me most is IVIg - I get it every two weeks and it makes all the difference.

I am not sure about the Cell Cept study...I was talking with my friend who does a lot of reading about these studies...It would be good to know what a longer study would look like - they only followed people for three months and it would be good to know the size and scope of the study. Statistics are easy to skew and can show different results depending on the variables. CellCept seems to work for some people with MG and not for others - like so many other things. I guess the encouraging thing is that they continue to fund studies. Good luck at your appointment and don't be afraid to try something new. The studies say that IVIg isn't effective in the long-term treatment of Myasthenia but I know that it has changed my life.
Gabe

Hey Gabe,
It would be great if they could at the very least try the ivig, or cellcept on me. All the major MG doctors say that Ivig, is the best kind of treatment as it doesn't cause the horrendous medical problems that the others do. But because it can cost up to 20,000 dollars a month, most insurance companies won't cover it. (nice to know they care:rolleyes: ) Prednisone is so cheap, like ten dollars a month. But the long term effects are rather serious.
Love Lizzie

MG and Seronegative
 

Hi Shari...

I'm new to this forum, but not to MG. My diagnosis was made in 1999 based on neuro physical exam and electrodiagnostic testing. As I am also seronegative for the KNOWN autoantibodies, my neuro confirmed my diagnosis also performing a Tensilon test.

It is believed via MG research that there are other yet-unknown antibodies that affect seronegative MG folks.

So don't let a doc tell you that you do not have MG just because your labs were negative.

Oh: A negative CT chest scan does not rule out MG, either.

I hope you find a good neuro...try to seek an MG specialist. If you call your local MDA, they may have a list of MG specialists. Opthamologists often make the diagnosis as ocular symptoms are usually the first to be seen.

I was declared disabled and went into early retirement in 2001. I have many overlap symptoms and other neurological and rheumatologic issues as well (other than the lupus).

Hope you have gotten some answers by now.

Take care, Shari.