Teresa,

At least you're going to get another opinion and you got in fairly quickly (most neurologists are about 6 months out on appointments).

Have you tried taking magnesium to help with the cramping? Sometimes that can really help. The best form is magnesium citrate and the dose would be 500-1000 mg per day (I would divide the dose).

I know that Isaac's Syndrome can make it difficult to breathe because of the spasms and pain. I have not seen Mexitil listed as a treatment, just Dilantin, Lamictal and a few other drugs that are used for conditions like epilepsy. Can your GP give you a prescription for Dilantin instead of Mexitil to see if it helps? GPs used to prescribe it all the time for other conditions.

Hope you get some relief...the heat and allergies combined can make you much worse when you have low magnesium. I would definitely give that a try. Also make sure you're getting enough sodium in your diet.

Hang in there - it can take time to get the diagnosis, but it's worth it to keep looking for the right doctors!

Jan

Type of Myotonia: Thomsen's

Country: USA

Thanks Jan. I just needed some encouragement. My mag was good about 2 weeks ago when I was in the hospitle but I will start taking it again. This humidity is killing me and I'm sure sweating is taking a lot of minerals out of my body. Generally I start feelig better late morning to have another downhill plunge late in the afternoon. I keep trying to find a common link here but haven't so far. I'm not sure if my GP would try anything new without my neurologist's approval even though she doesn't agree with his method of doctoring. The mexelitine had been working fine untill latly. I would have thought it would have been a gradual thing when it started to not be as effective. When I first started it I was like a new person. It made me feel better than I have in years. Now the current neurologist wants me to come down in dosage from 250mgs twice a day to 150mgs twice a day. For some reason he thinks the pharmacist made a mistake and upped the dosage without his prescribing it. (Actually I thik he thinks I'm crazy). He says they don't even mae 250mgs of mexelitine. I didn't even bother to argue with him because it just makes things worse between us. Anyway maybe the next neurologist will be open mided and look at other options. Thanks for listening.
Teresa

Type of Myotonia: still unknown

Country: USA

Hi Theresa,

I read the posts on here all the time. Just want you to know you are not alone. I have my good days and bad days like everybody else on here. Just take it one step at a time - I know it is tough.

I was not diagnosed until I was 35. All those years growing up with it - had no idea what it was called. The only thing that made it bearable for me was that my 2 older brothers have it as well. So, the 3 of us all had it and we never got checked. My parents would say "oh its just your "Stiffes" ". So, that is what we called it all of these years - the "Stiffes".

But I knew something genetic had to be going on - for the 3 of us to have it. So - I was the one that got tested for it and here we are today. So, that is how I ended up on here - listening to other pepole as well with their take on it. Jan also has given me a world of knowledge on the topic.

Anyway - enough rambling - just wanted to let you know we are with you.

Joe C.

Country: USA