my "diagnosis": is it firmer now?
 

Yep, here I am revisiting the big D issue again. Do I really have MG?

I was diagnosed, more or less, a year ago. I don't think the neurologist was willing to actually use the word "diagnosis." What he said was that myasthenia is numbers one through four on the list of possibilities. That was evidently good enough for my regular neurologist, who has been treating me for MG (with Imuran, Mestinon, and IVIg) ever since. Other tests ruled out everything else anyone could think of.

The reasons I was so hard to diagnose were: I'm seronegative; my first two SFEMGs were inconclusive (third was clearly abnormal); I don't have significant eye involvement; and my most severe, most troublesome symptom at first was weakness in my side muscles that made me tilt from side to side, from the waist up, as I walked. In the beginning, this looked like a balance problem or ataxia.

Now, a year later, I think I'm a bit more "typical." The side-to-side tilting is pretty much gone. Now I tend to fall forward from the waist up if anything upsets my stride. My legs also get weak so that I sometimes slowly collapse into a squatting position--slowly, so that it looks like I'm doing it on purpose. The weakness in my arms bothers me every day. Weakness in my neck, which makes it very tiring to hold up my head, comes and goes, a few weeks at a time. I had weakness in my fingers for about a month, but that's much improved now, too. I had trouble swallowing back in February, but not since then.

I am pretty convinced I have myasthenia. What else could it be? Are there any other similar diseases in which the muscle weakness shifts around like this? I haven't had that side-to-side tilting for months now. I no longer find myself arching my back to stop from falling backwards, either. I'm pretty strong in the morning, except on a really bad day, and weak in the late afternoons and evenings. I zip up and down the stairs in the beginning of the day, but sometimes at night my husband has to carry/drag me up to bed. I can pick up heavy things--I just can't hold them for long. My eyes are still good. Mestinon doesn't help me at all, as far as I can tell, but I can take a lot of it without much effect besides a bit of twitching. I've been on Imuran for nine months with no response. I've had three courses of IVIg: the first helped a bit, the second helped tremendously, and the third didn't help much.

So, what do you guys think? If you were me, would you be confident you had MG? Can anyone think of any other disease that behaves this way?

By the way, I have seven siblings, and seven children, and 29 nieces and nephews on my side of the family, and none of them has anything neurological going on. I'm 45, and have had symptoms, looking back, for almost three years.

Abby

The 2 things that stick out to me are the 3rd single fiber and you can tolerate Mestinon. I'm like you the Imuran and Cellcept haven't done a thing. As for Mestinon I miss my 3pm all the time and can't tell a thing. IVIG is the only thing I have had that seems to help me.
Hang in there
Mike

Abby, do you WANT it to be something else? OR are you worried that it IS something else -- if so, WHAT?

I guess you could look up disorders that respond to IVIG -- and then cross-reference them with "abnormal" SFEMGs and see what, if anything, shows up.

I think that as women, we second guess ourselves about a lot of "stuff". Are we pretty enough, thin enough, smart enough, interesting enough, good enough wives and mothers, good enough employees, and on and on. Is this worrying about your diagnosis somehow an extension of that type of insecurity?

I'm not trying to "psycho-analyze" you here or anything. I just hate for you to keep on worrying about it. Worry, as you know, isn't "our friend".

All I know FOR SURE is this. Your doctor says you have MG via an SFEMG. Your symptoms "fit" (and are becoming more "typical" with each passing day). At least one of the treatments has given you some improvement. So, to ME, that sounds like you HAVE MG.

Hoping that my post has not come across as harsh or insensitive -- but, as reassuring. As I've said before, sometimes I'm not so good with "words".

Jana, you're funny! Nope, I like my MG and wouldn't trade it for any other chronic neuromuscular disease I can think of. It's just that I don't want to destroy my immune system if it turns out I don't have an autoimmune disease after all.

It's my doctors who make me wonder. The neurologist who diagnosed me, or did something in that direction, sounded sure. But every once and a while my treating neuro rereads the letter the diagnosing neuro sent him and makes noises about what a puzzle I am. Evidently the diagnosing neuro was more certain out-loud than he was on paper. (I know...I should get copies of everything...good advice that I haven't followed.)

Also, one of the neurologists told me that a positive SFEMG doesn't necessarily mean MG, but I didn't get a clear answer on what else it could be.

Anyway, I made an informed decision and decided there was enough evidence to justify the treatment I chose. I'm not thinking of dropping the treatment. But I'm wondering whether the shift in my symptoms means I can put some of the residual doubt to rest.

Abby

THANK YOU for not taking offense!! And I appreciate you thinking I'm funny!! I've often been accused of NOT having a sense of humor. :D (Want to be able to SING, WRITE, AND tell JOKES!!!)

Anywho, here is the link you want:

http://neuromuscular.wustl.edu/mtime/mgdx.html

Scroll down to this part (under SFEMG):

Now, I am SURE you don't have ALS (IVIG doesn't work and your muscle weakesses fluctuate). Hasn't polymyositis also been ruled out? I dunno, I guess it is possible that you have LEMS. Has it been ruled out? It IS in the "MG" family.

Thanks, that's just the info I was looking for. I did test negative for LEMS once, for what that's worth. I also haven't developed any cancers, in three years since I've had symptoms, so that seems very unlikely. As for ALS, on the whole, I would say I haven't gotten worse for a year and a half. I also have no muscle twitching or foot drop (I have had the sole of my foot scratched by many a doctor, I can tell you that!). After my next-to-last IVIg, I had six weeks with no symptoms at all. So, I am really confident that I don't have ALS either.

I asked my neuro about polymyositis once, and he said no, but I can't remember why.

The specter of congenital myasthenia never quite goes away for us seronegatives. But would be very unusual not to have symptoms until I was 43, and with such a large family of healthy people, it sure seems unlikely. I couldn't help noticing that one of my nephews seems to have a drooping eyelid in many of his photos (thanks, FaceBook!) but I am just barely wise enough not to say anything to my sister-in-law--unless of course she starts mentioning that he is having neurological symptoms! She mentions all of his medical stuff (thanks again, FaceBook) so I'm sure I'd hear.

Anyway, thanks so much for talking about this with me, Jana, and for the link. I feel a lot better.

Abby

There is a lady in town who has polymyositis. She came to one of our garage sales. She also sees my MG guy. She showed me her legs -- YIKES!!! They were like WASTED away -- almost like a 100 year old person's -- and she is only like mid 50's. And her muscles "wobble" -- I've never seen anything like it. She also talked about having fevers all the time. NOT a "pretty" disease. AND she walked with a cane -- LEANED on a cane, I should say. She said she would be in a wheelchair within a year or two -- PERMANENTLY. :(

We have photos of my sister with a drooping eyelid, too. She has had the bloodwork -- negative. But, as Mike says, I think it is just a matter of time.

I'm glad that me talking with you makes you feel better. It is nice for ME to feel USEFUL!! My house is a TOTAL wreck -- LOL!! As a type-A, this is one thing I've had trouble getting adjusted to.............but, there ARE some things we just HAVE to "let go", right?!?!! I can still "counsel" sometimes -- if/when I make sense (LOL) -- but, I can't clean a bathtub for ANYTHING!!

In my "heart", I really think that EVENTUALLY, you will test positive OR that you have an antibody that they just haven't developed a test for, YET!

I've been reading up on polymyositis a bit. I don't have any pain, and no fevers. I see that after a while, polymyositis causes muscle wasting, as you say, and after three years, I don't notice any of that. Also, my first lab slip had those muscle enzyme tests--all normal. I also see that polymyositis is treated with immunosuppressants and IVIg, so even if that's what I have, I'm probably already being treated for it.

Yes, I sometimes think that I must have an antibody they don't know about yet. I know that the MuSK antibody has only been discovered fairly recently. Complicated things, those neuromuscular junctions!

My house is a mess, too, especially since my two college-age kids finished their Christmas break! They did all the cooking and dishes for the month they were home. Also, the week I had my IVIg, my daughter homeschooled her three little brothers for me. How lucky am I?

Cleaning brings on my MG symptoms. But at a certain point, the mess causes me so much stress that I'm better off cleaning. I do realize that not everyone has the luxury of choosing--if, for example, I was likely to set off a crisis by cleaning, then I'd just have to deal with the mess. I do have a sweet husband who is willing to help me, but he is already doing so much that I hate to ask him to do anything else.

Abby

I was thinking about this. My doctor never said I was diagnosed with MG. He told me my symptoms were consistant with MG and to try Mestinon. The Mestinon helped wonderfully and I am now more stable with less ups and downs. My neuro agrees that I am stable and the severe double vision is gone so I should keep taking Mestinon.

Do I have MG? I'm pretty sure I do but for me what really matters is the treatments. Are the MG treatments helpings? For me they are, although I am far from normal at least I am no longer bedridden most of the time, for that I am thankful. Mestinon does help me but I need less of it all the time. Sometimes I wonder if I am slowly healing from something else with MG-like symptoms. Maybe I am just getting used to being weak all the time and think I am getting better, lol. At least I'm not getting worse.

Do you have MG? I think so, because your symptoms seem similar to other people here including me even though your symptoms aren't typical. What is MG? It seems to me that MG is caused by various things, much that is not well understood, and we are all grouped together because generally the treatments are the same for all of us. I think you fit into the MG family just as much as I do.

I wish more was known about the subcategories of MG. I wish more was known about MG in general. I wish more was understood about the creation of antibodies against the self. I wonder if there is a way to help our body stop making antibodies against us besides immunosupressants, there must be a way to strengthen the part of the immune system that makes sure we aren't attacking ourself. I've considered studying the immune system myself in detail, so I can understand better how it works. It seems to me that no one in the medical system is studying this in detail. I wish I could be of help somehow...

I think it is good to be researching other options and to keep questioning. Maybe one of us will help directly or indirectly discover new treatments or ways to prevent getting MG. I am glad you are asking questions. :)

Jana, so OK, I'm searching google for Polymyositis Myasthenia Gravis, and I come across a link to this forum entitled "Polymyositis--for Abby" from you. Looks like we've been over this before. You suggested it, I asked my doctor, he said no, because my EMG and CK and aldolase levels were normal. Evidently, I'm going round in circles.

Well, evidently it would be unusual to have polymyositis with normal CK and aldolase levels, but no more unusual than having MG without eye symptoms, and that doesn't respond to Mestinon.

I guess I'll ask the doctor about it again when I see him in a few weeks.

Thanks again.

Abby