Hey guys,

I decided to add a blurb on this because I came across some articles on people being misdiagnosed with MG who had MMD, or who had both diseases at the same time. There have also been cases of people having MMD and thymoma, enough that it seems more than a coincidence...

Here are the sx. of it.

Muscular dystrophy symptoms

Muscle pain
slowly progressive muscle weakness (sometimes over decades)
-muscle weakness could affect all or some of the following: vision, eyelids, facial muscles, swallowing ability, breathing, arm/leg strength, hips
Cognitive issues (brainfog, problems with executive thinking, depression/anxiety)
Endocrine problems such as diabetes, thyroid disorders, etc.
Immune system problems such as autoimmune disease and/or being prone to infection (due to low IGg levels)
Cataracts
Excessive tiredness due to sleep apneoa (central) and muscle weakness
Heart problems such as murmur, mitral valve prolapse, problems due to electrolyte inbalances, conduction problems, slowed heart beat
Myotonia (muscles that remain flexed after activity)....For example, holding on to an object, and then the hand remains in the same flexed position...
Reproductive problems- tipped uterus, uterine spasms (these are actually myotonic discharges), infertility
Possible hearing loss (unusual)
GI problems
Premature balding in men
Reproductive problems in men
Shrinking of testicles (in men, obviously...lol)

In this one, there's something called 'anticipation.' Basically, if you have it, then your child has it, it is slightly more severe and occurs at an earlier age in the offspring of the person it's passed down from.

I've read about the strong connection between DM2 (myotonic muscular dystrophy type 2) and autoimmunity.

Type 1 is more severe than type 2. Type 2 was only recently discovered, and is often misdiagnosed because of its chamelion-like qualities to other illnesses (especially Fibromyalgia/ME). I know that there are some people here who have developed cataracts, and who are having problems that aren't responsive to typical MG treatments.

Nicky, That's nice of you to take the time to post this.

I'm glad I don't have it. Do you think you do?

Annie

It's funny...A long time ago...A couple of months before my speech issues started, I decided to look up weak hands with stiffness...I noticed that whenever I went for groceries, My hands would remain in the same position after putting the bags down that they had been while I was holding onto them...Not for long, but for a bit...Simultaneously, my hands were weak...Anyway, this popped up after my search- I freaked out, and decided not to look this up again (lol), but it's always been in the back of my mind...My mom has the same issues with the stiffness in her hands...My mom also has problems walking...She lifts her feet up from her hips, like a soldier..It's hard to explain...

Also, I've always looked muscular, especially my upper body (in the past, not so much lately)...People always think that I work out, even though I barely do...Once, I went to the hospital because of breathing issues...The doctor on-call was like, "You work out a lot, I can tell." I was like, "huh?"

Now, I notice this muscular-ness in my calves...In the morning, my calves look thin, but at night, they look much more pronounced, muscle-wise. I look like a runner even though I don't run. Also, after noticing this, I checked them before I did some jumping jacks in the morning once. They were thin-looking. I did 20-jumping jacks, checked again, and my calves looked huge...Maybe this is normal, though, i don't know...


It's the slow progression of a lot of my problems...Many don't get better after PLEX...Makes me wonder...

Okay, quit wondering and tell your doctor!

This is exactly why it's so frustrating when I hear someone has not been definitively diagnosed and then something else pops up. Do you really need Imuran if you have something that's not autoimmune?

I can't remember if you have MDA clinics in Canada. Can you see someone who is an expert at this to at least rule it out? It would make me crazy if I didn't know for sure - and I didn't for years - what disease I had. I'm classic MG, though.

Well, crap. I hope you will talk this over with at least your neuro, if not primary doctor. You never had antibodies but had a positive SFEMG, right? Or is my mind completely gone?

Annie

Hi Annie,

Actually, I had a thymoma, positive blood test, positive SFEMG and repetitive stimulation test...I definately have MG, for sure...I think that I might have this too, though...

I know....It sounds crazy! I just can't explain this weird stiffness I have, as well as other issues...This seems to make sense, especially with the problems my mom has...Now, I have to mention this to my neuro.. I'm afraid they'll think I'm insane, though!

Nicky

Well, you can have positive antibodies while having a thymoma in your body. Have they retested since they took out the thymoma?

You're not crazy. Whenever you have symptoms that can't be fully explained by one disease, you have to look at other causes. Simple science!

I can't find the articles I want! They are in PubMed and they talk about patients who have had a thymoma, have positive AChR antibodies, they take the thymoma out and then the antibodies (and disease state) are gone.

Here are some others which may be of interest.

http://www.ncbi.nlm.nih.gov/pubmed/19562765

http://www.ncbi.nlm.nih.gov/pubmed/15534101

And to confuse you even more:

http://www.ncbi.nlm.nih.gov/pubmed/18657424

And just because it's way too funny:

http://www.ncbi.nlm.nih.gov/pubmed/15526902

Maybe you simply have MG bad. When I had my crisis, my hands contorted for a couple weeks after any time I tried to hold something for like seconds.

Annie

HA!

That is hilarious...In my search of MG articles in the past, I've come across so much veterinary literature as well...It seems like animals are treated better than humans, for the most part...Whenever I'd read the case history of the creature's sx, they would describe what seemed like mild weakness in the animal, and the animal would get diagnosed appropriately...For humans, it's a different story, isn't it? lol

A kinda strange thing I came across before is the high prevalence of thymoma in Nubian goats....I was like, "alright, have I been eating too much grass lately?" lol

Anyway, I certainly hope that I don't have MMD, but I always wonder about it with some of my problems...The bulbar sx I have respond well to PLEX, but the stiffness, shoulder, hand weakness, not so much...Those were my first areas of weakness, though....Maybe I have too much damage to my acetylcholine receptors in those areas because the disease went on for too long, if it were indeed caused by MG...It certainly is fatiguable, so maybe...I've had progressive hand weakness for many, many years...

Thanks for the links, Annie! You made me feel better! I mean, it sucks to have these problems, but the idea of a progressive disease is very upsetting...But on the other hand, if that's what it is, that's what it is! It's better to know, than not!

Nicky

Nicky,

Stop eating so much grass. Your comment was funny.

I too seem to find so much animal information on MG, too and thought the same as you, that the animals generally seem to get better treatment than us humans.

I wanted to comment on your muscles. I have a similar thing, but I don't think it is a problem. I am thin, have never worked out (but I am active) and have always had muscles and I am very strong, often surprising people (I can easily lift 100 lbs and I weigh about 120 lbs). My grandma who is now 89 is the same way and even now she is still strong and healthy. She says it is all her Danish farming ancestors, that all the woman are strong where she comes from. When I was a teenageer this was embarrassing to me, since most of the girls were thin and I thought my shoulders, arms and legs were too big, but I have learned to be proud of my muscles. Even now with MG I have large muscles and look like I work out. And my legs and arms do what you desribed, after any activity my muscles seem to have more definition and look bigger, it has always been that way.

Since I got MG my hands get stiff easily, I think carrying groceries is one of the worst things, my hands get stuck for a bit after carrying them and this didn't happen before MG...hmmm

I hope you don't have MMD but better to know it if you do. Sometimes when I read about other disorders I start wondering since I also have a few symptoms that my neuro says is definitely not from MG. I do have a defininite MG diagnosis, I have the antibodies.

Thanks for sharing the info.

Hi Desert,

Yeah! It's such an anomoly! I'm actually pretty strong too, so I just don't know about any of this! But I also really push my limits, so it might just be sheer will...I still *try* to do push-ups, but it's so hard now! I used to be able to do 30, even when i had difficulty doing 1 (which was never a problem...I could always do at least 10, but maybe that's normal)...But I'd push myself to do 30....Normally, in the past when I'd reach a certain number, it'd get easier, the way it's supposed to...But time and time again, it'd be exhausting to do the same number...That's when i kenw there was a problem..

I've been doing them recently...I can get up to 10 (I'm trying to get rid of the gift prednisone gave me: upper body fat)...

One time, when i went to the hospital, the neuro. guy on-call said that my weakness was really strange...My hand grip was super strong, but my wrists were very weak as well as my fingers...He said my shoulders were weak, but my arms were okay, but my forearms were weak too...On another note, I can't do sit-ups at all anymore...It's almost impossible! My sister almost fell over laughing when I tried to do one (it's okay 'cause I was laughing too hehe) lol.

It probably is just a combo. of MG, not being physically active all the time, but being physically active in very particular areas (like doing push-ups) that causes these strange weakness problems...I also suspect that maybe the thymoma caused some other weird antibodies that could be joining the party in the weakness depot as well...

I'm so relieved about your muscles appearing larger after doing some workouts...That's probably normal, I think...I think that I looked it up before, and I read that it's normal...Or maybe it's neuromyotonia...I'll take neuromyotonia over MMD, I think! LOL

About your hands getting stiff- Oh God, what a relief! I thought that i was the only one...Maybe this is a normal part of MG, eh? Or maybe you and I have some other crazy antibodies...

Sometimes it's the feeling of being completely alone with something that makes it so hard...It's nice to know that others have the same experience (even though I wish that it was a favourite TV show, or band that we shared instead!)...Makes me feel like less of a weirdo!


Nicky