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Re: Thank You for this forum... I now know what my condition is!

Hi Jenna...

So funny... I too thought that I was the only one in the world with this condition since I had not been diagnosed with anything, (despite three attempts on my part to convince doctors), combined with the fact that I never saw anyone having the same difficulties going up stairs...

Type of Myotonia: Probably Beckers

Country: Canada

Re: Thank You for this forum... I now know what my condition is!

Thank you Jenna for the information that you have provided. I'm going to see my GP very soon. I think I'm going to wait and see how this "Obamacare" thing is going to pan out. I'm paying a lot for healthcare now as my current job doesn't offer any health insurance... well not cheap anyways. So, I might be switching up my health plan here soon. But back to the topic at hand. Does anyone like me have it worse some days than other's? I think like everyone said it might have something to do with the temperature of my body.

Type of Myotonia: I think Thomson's

Country: USA

Re: Thank You for this forum... I now know what my condition is!

Hi Patrick

For my part, stress and anxiety will definitely worsen the condition. Therefore, if I live a very emotional/stressful event, I will be unusually stiff to the next 24 hours.

Alcool may also have an effect on the condition; if I take one too many (which is not very often;-), MC will definitely be worse the next day.

Cold will affect my face only and my ability to speak (canadian winters will do that to you)

Pete

Type of Myotonia: Probably Beckers

Country: Canada

Re: Thank You for this forum... I now know what my condition is!

Patrick,

You might have better luck going to an MDA clinic in your area. They are affiliated with large university medical centers. You can find the closest to you by going to their site at MDAUSA.org. They will cover any charges that your insurance doesn't pick up. Some do DNA testing, others don't. It's a fairly long process, usually starting with an EMG to see if you have myotonic discharges in your muscles. Then depending on the doctor and clinic a panel can be ordered to see which type of myotonia you have. Since your cousin is affected it is most likely Thomsen's. You don't need a muscle biopsy unless everything comes back negative and there is some other condition that needs to be diagnosed.

The main reason DNA testing is beneficial is because greater precautions will be taken if you need surgery or emergency treatment. After 30 years, doctors STILL don't believe me unless I have a copy of my DNA results in my records. Getting the right anesthesia protocol is crucial...even if you've had uneventful surgeries in the past, that doesn't mean you won't develop a life-threatening reaction in the future.

I'm glad you're finally finding out what the mystery condition is in your family :-) For some members in my family it was a relief and others denied it in spite of obvious symptoms. I think the goats are good ambassadors even though some people don't like the association.

I have been able to control my symptoms with diet and avoidance of things like pesticides and herbicides, certain medications and stress (when possible). I had too many side effects from the medications I did try years ago. I never used Mexitil, but I don't really need it now. Back then I was so stiff I could hardly get out of a car and sounded like I was drunk when I answered the phone. When I was young I had a lot of trouble with choking and thought I was going to die. I would go to bed with my Bible under my pillow and say "Now I Lay Me Down to Sleep" with great seriousness for a chld! The doctors my mom took me to thought I was making it up and that I was just high anxiety. It breaks my heart that there are children all over the world going through the same thing right now.

Please keep us posted on your diagnosis journey!

Jan

Type of Myotonia: Thomsen's

Country: US

Re: Thank You for this forum... I now know what my condition is!

Jan,

Thank you so much for the info. If there is a such way to suppress the problem rather it be through diet or medication then I'm all for it. Over the years, I was heavily involved in sports, specifically flag football. I had to stop playing because of too many episodes and I would try to take off and would end up stiffing up and in many cases falling. I injured myself pretty badly playing FF when I jumped to catch a pass and stiffened up in mid-air and on the way down I couldn't land properly therefore hitting the ground pretty hard. I would love to get back out there and start back playing again but I wouldn't be able to with my MC being this bad. I will certainly take your advice and go to an MDA. That sounds much more beneficial to me and furthering the research on MC.

Type of Myotonia: I think Thomson's

Country: USA