[Nicknerd]

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.

[AnnieB3]

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

[Nicknerd]

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...

[AnnieB3]

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

[Nicknerd]

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

[AnnieB3]

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