Anyone with myotonia congenita? - Muscular Dystrophy Message Board

tata33 · 04-02-2008, 11:27 AM

My dad and my grandpa both had it and I was told that I have it. I would have problems when I was in high school and I would be racing in track and fall flat on my face cause my legs wouldn't go anywhere. My grandpa was almost having to go through exploratory surgery till a dr. finally said that is what his problem was and he even had problems with his stomach and all. I have been having stomach problems also and just wondering if it could be from this MC. The MD dr. that I saw wanted to put me on a med that is for seizures but it made me really tired to where I wanted to sleep all day and I have kids so I can't so I only took it like 2 days and I only took half of one and I was still tired. He also told me that MC couldn't cause stomach problems but I was like if my grandpa had them with it then why can't it,,,I don't know. I wondered if maybe I needed to see someone else. I have knots in the stomach area and in the chest area that I think are due to a muscle thing....but not sure on that I just know the knots hurt and sometimes i can go a couple of months and they don't hurt and then they flare back up and I think alot of it is due to the weather. Please help if any one has any ideas.

RavensGirl · 05-09-2008, 06:51 PM

Hi! I am so glad to have found you! I also have myatonia congenita and so does my dad.
I also experience the falling and muscle weakness. My dad has had several episodes of periodic paralysis. We both have stomach problems ao that may be related to the condition.
I have knots in my neck that cause migraine-like headaches and they flare up when there is a weather change. Cool fact: I used to live just across the border from you in north Texas and, if you pay close attention to your body's signals, they will tell you when bad weather and storms are moving in!
It is very hard to find doctors who know a lot about the condition because there are not a whole lot of us that have it. I have'nt had much luck myself.
One thing you might want to do is have your kids tested because it is genetic. It is very fortunate to know your grandpa has it because my dad and I did not know our biological relatives or our family history and it took twice as long to find out what was wrong with us!

tata33 · 06-10-2008, 08:43 AM

sorry ravensgirl I haven't been on here in awhile I forgot where I had posted stuff at. Well I might get into a doctor in a few weeks that might know more. I talked to my mom about this problem the other day cause I have been going through some of this for almost 3 years now. And my grandpa was going to have exploratory surgery at the OU science center in Oklahoma City, OK and then a doctor told him what he had and did fine after the meds. I went to one MDA doctor but he told me it was not the MC that was causing stomach problems so needless to say I haven't been back to him. Cause why would they tell my grandpa that his was that and tell me no. I think it is some doctors now a days. And a doctor told me this once here recently and how true it is. The newer doctors like to go by the book but no one patient wrote that book. So therefore you go by the patient to learn new things.

tata33 · 08-15-2008, 09:39 PM

I went to another doctor last month that deals with this and the only med for it is for seizures and I can't take it cause I tried one pill and could have slept for 24 hours or longer. So still checking into to it he said most people just live with it and don't take the meds. So if you find out anything let me know.

tirressa · 09-26-2008, 09:41 AM

I have adult onset myotonic dystrophy . It was confirmed by a genetic test. The best doctors to see are at MDA clinics. Myotonic dystrophy is a fairly new discovery so most general doctors are unaware of it. Neurosurgeons cover it briefly in school. The neurosurgeon I saw used a EMG test to find it. He said he had never treated it. He sent me to the neurology/muscular disorders at UT Southwestern clinic. She had me do a sleep study (sleep apnea is common), wear a halter monitor (problems with the smooth muscles that send signals to the heart), have a echocardium (not a ekg because this can give false readings), and have my eyes checked for cataracts. I had already had cataracts when I was 40 years old. I do have sleep apnea but do not snore.

There is a group at Rochester Hospital in Rrochester, NY that studies myotonic dystrophy. You may be able to be part of some of the studies and comfirm whether or not you have myotonic dystrophy. Hope this helps.