Thanks again Jan. Actually the doctor I am talking about is at the University of MS. He is the only doctor in the state that I know of that deals with mc. He is the (teacher) which might explaine a lot. I wonder if there is another MDA clinic in MS. The only problem with all these test is I haven't worked since August 2011. Money it tight. Even at the MDA clinic I have to pay a co-pay over what my insurance doesn't pay. I really don't get the reason for the clinic if you still have to pay for everything out of pocket. They say the doctor has the say so of where the funds are spent. His thinking is there are a lot more serious diseases out there that the money could be better spent on. That came from another woman who was seeing him for the same reasons. That may very well be but if you don't have a definite diagnosis how do you know how serious the illness is or is not. Anyway I've taken a lot of your time. Thanks again.
Teresa

Type of Myotonia: still unknown

Country: USA

Teresa,

I can't say enough how important it is for you to keep looking until you find a doctor that is determined to get a diagnosis for you. If you just had MC and your symptoms were stable, it would not be a big deal. But obviously much more is going on and you have to be your own advocate.

I don't know what is going on with the MDA lately, but I have been very disappointed in their services in Denver and it sounds like you're running into some of the same problems. They have never charged a patient a co-pay in the past so they must be losing funding. You would do just as well to find a neurology clinic nearby since you have to pay anyway. I would look for a fairly new graduate from medical school. They will be much more educated about DNA testing and will have better research skills.

If you're going to file for SSDI or long-term disability you will need a confirmed diagnosis and there is a time limit. MC is not listed in the SS bluebook, but if you turn out to have DM1 or DM2 you will be awarded disability with no problems.

Jan

Type of Myotonia: Thomsen's

Country: USA

Teresa:
I sent a letter to Dr Griggs at the University of Rochester, in his reply he allowed as how all MDA clinics (Doctors) were not equal. He recommended that I see an expert.

I responded once before that the UT South Western clinic in Dallas had one of the leading doctors in myotonic disorders.

In my case I downloaded the Athena Diagnostic requisition PDF from their website and filled it out myself. The business manager for mt GP filled in the doctors specifics and the doctor signed it.

If you check the "home draw" and FAX the form as instructed on the bottom of the front page they will send someone to you to draw the blood at no additional charge.

If you take this option and prepay there is a 35% discount.

The combined test is for: ZNF9, DMPK; CLCN1; and SCN4A genes. Check first to see that Dr. Lehman-Horn has not already done them. The combined test notably does not include the KCNE3 gene.

Type of Myotonia: SCN4A (PAM?)

Country: NC US