Jan

Thank you for your response. I actually don't live in New Orleans anymore (thanks to Katrina) I just have kept the name in my email address. We now reside in Idaho where we grew up.
I had to stop taking the Lyrica because I didn't feel like I was able to properly care for my three small children on it. So I am still dealing with the neuropathy and they can't seem to understand why I have it. I had the genetic testing done and my Neurologist referred me to a genetic counselor to answer my questions and I see her on Friday. I don't understand what form I have I have my reports but it doesn't make sense to me. It says I have two disease associated mutations in the CLCN1 gene. I didn't show a repeat needed for DM1 or DM2. Anyway, thanks for the reply. I love your site and all the information it provides

Jessica,

None of my New Orleans friends stayed after Katrina, either. Glad you're out of harm's way, even if it is cold in Idaho :-)

Everyone with Becker's MC will have two disease associated mutations on the CLCN1 gene...those of us with Thomsen's only have one. So that sounds pretty definitive. It's great news that they ruled out the myotonic dystrophy.

As far as the neuropathy, have you been checked for West Nile Virus? You wouldn't be positive for IgM antibodies since the outbreak in Louisiana was in 2002, but you should still be positive for IgG if you were infected. A good friend previously from New Orleans contracted it in 2002 and still has neuropathy.

It might be worth doing a test just to see. An infectious disease specialist at my doctor's clinic believes the virus can remain in the spinal fluid and continue to cause problems for years. It sure caused severe neuropathy for me. One person in my support group got better after taking Prednisone for a short period so it must set up some sort of autoimmune response.

I'm glad the site is helpful. We learn a lot from each other!

Jan

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?

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

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

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

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

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

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.