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Re: Any other muscle diseases that MC people tend to have?

Thanks Jan & Jenna for your replies :) they gave me a lot to think about!

Jenna, out of curiosity, what makes F413C especially peculiar? :) I also got interested on the study you found about weakness, do you still have a link to it?

I'm not sure which symptoms are the ones the new neurologist does not think comes from MC. Me and my sister do also have some weakness which occurs in similar situations than muscle stiffness (like, when I grab something to my hand, in few seconds or even a bit later, like after 10-20 seconds the working muscles just suddenly loose power). The same happens sometimes in yoga class in the middle of the training.

Also, as I live in a cold country, when going out on a walk makes me stiff sometimes: even so stiff that my spouse had to drag me up about 20 steps 'cause after an hour walk my muscles were so stiff. And in this case, the stiffness did not ease when continuing the movement - walking just got harder.

One thing what the doctor said was that as Becker is recessive, and my mom & dad who don't have the disease itself, they should not have any symptoms. However they both have had minor symptoms (like my Mom has extra large muscles, and dad used to walk funny way when he was younger). Also he thought that it is somehow general for people to have multiple gene errors what it comes to muscle diseases, so I thought I'd throw here a guestion about it. As MC is such a rare disease, I often tend to trust more on you guys than doctors who might not have ever seen any other MC patient :) With all due respect towards doctors!

I think I've read from somewhere that Becker carriers might have minor symptoms, despite the fact that it is recessive, but I cannot remember from where I read it.

Type of Myotonia: Becker's

Country: Finland

Re: Any other muscle diseases that MC people tend to have?

Heini:

While I think your doctor should continue investigating the symptoms he think might indicate a second disorder, the symptoms you mentioned, at least with respect to the way you explained them, could be contributed to the MC.

F413C is an odd mutation because it is a recessive/dominant overlapping mutation. In most instances, it requires the presence of another MC causing mutation for symptoms to manifest. However it has been found in some individuals and families to cause symptoms by itself. There are other MC causing mutations like this, and so it's possible that while your parents only each have one mutation and those mutations are usually recessive, that they could have caused symptoms in your parents.

Recessive MC is documented to cause weakness. Usually this weakness onsets soon after beginning a movement, and then dissipates with continued movement such that the person can work through it, however I get various forms of weakness and sometimes I can work through it and it will resolve, and sometimes I can't, depending on the type.

I used to wake up with very weak feeling hands and the weakness would dissipate after a few minutes of moving my hands around. I also get a generalized weakness due to heat or not enough sleep sometimes which feels more like the type of weakness you might get if you have been sick for a while. I usually wake up with it though I've had it come on once or twice while awake. I can sometimes walk it off but not always. Lying around makes it worse.

But then I get other types of weakness that I can't walk off and which not resting will make worse.

I've always had very poor stamina in the muscles needed for good posture, and as I got older they would fatigue a lot faster and start to burn. If I ignored it, they would eventually give out and I would be stuck lying on my back for the rest of the day. As I've gotten older, the muscles in my upper back have become much more prone to fatiguing like this. I find potassium helps the burning and fatigue in those muscles a little but I couldn't possibly safely consume enough of it to completely rid myself of the problem. I develop burning and weakness in my arms and hands a few seconds in to things that require a lot of force, like using the hedge trimmers to trim the bush in the backyard, and so I can only do a little at a time, and I've gone through periods where my arms and hands start to burn while brushing my teeth, washing my hair, picking out things at the market, and putting them away. I also get weakness/fatigue in my hands now when I try to write and this has caused me a lot of problems and makes my hands feel very unsteady.

I do not have the warm up effect in all of my muscles. The myotonia in my lower abdominal muscles and upper back, shoulder, and neck muscles gets worse with movement and I think that is one reason for the burning and fatigue in my upper back muscles....the muscles can't relax and burn through all of their energy and then...still can't relax. At the moment I've had a mild burning in them for three days which comes on shortly after I wake up, and makes me feel like I've been doing hard labor or walking around with a 50lb pack on my back even though I haven't. My upper arm muscles have been burning this week too. My back and arm muscles burn right now and the only thing I've done is get up, make breakfast, and sit down here at the computer...but you wouldn't know it from looking at me.

I've had a few episodes of weakness in my neck which didn't have any burning, I just couldn't hold my neck muscles up anymore after studying for a few hours, but that's not common.

If I get particularly cold to the point where I am shivering, I usually can't completely relax my muscles. In this situation I can't relax my neck muscles or jaw muscles at all and my jaw muscles have contracted hard enough to pop my jaw out of it's socket before. When my myotonia was very severe when I was a teenager, I had a similar problem with the muscles slightly dislocating my hip on one side so all winter I would walk with a limp.

I've often wondered if I could have something aside from the MC that is causing the weakness but I do hear from a lot of people with MC with very similar symptoms.





Type of Myotonia: Becker

Country: USA