Return to Website

Myotonia Congenita Forum

 

This forum has been closed for comments.  You can still search archived messages.

 

Visit  the Non-Dystrophic Myotonias  Facebook Group

Myotonia Congenita Forum
Start a New Topic 
Author
Comment
View Entire Thread
Re: Re: Trying to understand MC

I started having the burning in my hands and feet at about the age of 20 (31 next week). It only happened at night and was gone in the morning. I thought it was my body being tired from work I didn't become concerned until recenetly when the burning was affecting my during the day. So I am going on 10 years with symptoms recently getting worse. Any thoughts?

Re: Trying to understand MC

Hi Jessica - I agree with Jan (and she is a GREAT resource!!) I have Becker's type Myotonia Congenita. It is more rare, and more difficult to get than Thomsen's type, because Thomsen's is a dominant gene, so you can get it if just 1 parent passes it to you. With Becker's, both parents must have a recessive gene, plus, you have to get the recessive gene from each parent in order to get the condition - the likelihood of this inheritance is only 25%. So - lucky us!! The good thing about this, however, is that it is extremely unlikely, unless you marry a relative, or live in a very small and isolated (inbred) community, that any of your children could inherit it. They may be carriers, however.

You might want to read some of the personal stories on Jan's main web page, and also request DNA testing for confirmation. The genetic counselor may recommend DNA testing for your kids, which is a good idea - then you know if they are clear, or carriers, and can give them the future option to have a spouse tested.

My symptoms were also not bad during pregnancy, and I wonder if it is just individual, or if the Becker's folks and Thomsen's folks have somewhat predictable differences - for instance, Jan has a terrible time with potassium, even bananas bother her - but I don't seem to be really affected much by this. Anyway, glad you're here, and hope the forum helps you as much as it has helped me! Lois

Re: Trying to understand MC

Jessica - what type of work do you do, and what does it involve doing on a daily basis? Lois

Re: Re: Trying to understand MC

When this started I was dental assisting FT but now I am just a stay at home mom.

Re: Trying to understand MC

That's interesting about the dental assisting...mercury toxicity can definitely cause burning hands and feet. I just read a section from a rheumatologist's Q&A that mentioned it. Were you exposed to mercury from fillings at your job? I worked with a client a few years ago who had neuropathy like you describe and found out she ate tuna salad ever day for lunch - the mercury in tuna is very small, but if you eat it constantly it can build up enough to cause nerve damage.

I think the whole almalgam scare is a bit overboard but there definitely are legitimate cases of mercury poisoning. It's breathing the vapor from drilling out old fillings or handling new material that causes the nerve damage. That type of mercury is not harmful if swallowed like the methyl mercury found in fish.

A B-vitamin deficiency (primarily B1 - thiamin - or B6) can cause burning. It's pretty easy and quick to correct if that's the source, but I'm sure you would have caught that by now since it's been so long.

Lyme disease can cause burning of the hands and feet with neuropathy if the infection is chronic. I have a good friend who is finally getting treatment for that after almost 20 years...she's doing hyperbaric oxygen and it's helping.

Have you seen a rheumatologist? That might be your best bet rather than a neurologist. My dad got severe burning of his feet from socks containing synthetic fibers like polyester and I can't wear clothing containing polyester or it I get terrible burning, but it has never affected my hands and it's only from contact.

Keep looking for answers - it may take a while to find the right doctor but it's worth the search!

Jan

Re: Trying to understand MC

I was wondering because when my hands/arms burning sensations started, I was doing case management and spending 8 hours a day at the computer and writing and stuff with my hands, so I believe that Repetitive Stress Injury was part of the problem. Lois

Re: Re: Trying to understand MC

My hands so burn but it is mostly my feet. It so bad I only wear sandals. If I am excercising or something else that require other footwear I am dying about 15 minutes because my feet are on fire.