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Re: Re: Letter for Health Care Providers

I loved the letter, especially the part about the muscles feeling like you have the flu after a workout. I don't know how many times that has happened to me and I have been terrified that something really wrong was going to happen to me. My thoughts have even gone so far as to wonder if I pushed it too far would it kill me or make me very sick.

I wonder if there are any Senators or Representatives who have a disability, and have connections with the medical community who would pass this letter along for us. I know a State Representative, and I will ask him that question. How would you feel about passing this letter along to someone in the political arena?

Re: Letter for Health Care Providers

Great letter. Hits all the key points.

Couple observations.

It may have been better to limit the letter to one page, like a resume; employers dont want to read two pages.

Instead of concentrating on journals for its distribution, we should concentrate on getting the word out about our plight to the researchers who would be most likely to help us. Good place to start is Consortium for Clinical Investigations of Neurologic Channelopathies (CINCH). There annual conference was in June 2007; meeting of the minds for non dystrophics. Letting them know about this group is the key to getting the word out. Target the researchers attending this conference. If possible members attending future conferences would be of great help.

A similiar plight existed in the Yahoo DM2 group.
They focused on attending conferences and targeting
researchers and now have developed key relationships with several researchers.

Re: Letter for Health Care Providers

Dear Jim and Bruce - Great observations from both of you - all valid points (but Jan and I did choose to keep it at 2 pages), and there is absolutely no reason we can't "saturate" the market with this info - the intention was to allow the "treatise" to be printed by MC folks to give to their physicians, families, and other concerned folks, and also to send it to medical groups, schools, medical research groups, foundations, state and federal health commissions, journals and anyone else who might be appropriate. That's why I wanted feedback (and help!) - because so many people have very good ideas, possible connections, and those overseas may be able to give this essay to their doctors and researchers, and maybe help them, as well. Anyone who plans to send or give it to a public figure, foundation or school, if you don't mind e-mailing me and letting me know, so I can keep track and not duplicate your efforts! And I will list where I have sent it, so everyone knows, as well. Thanks for sharing your ideas! lois

Re: Letter for Health Care Providers

Hello,
I was wondering....since I am in the process of trying to obtain SSDI---would it be beneficial to send this letter in? In hopes that it would be read and taken into consideration of my disease and my case?
I was already denied benefites once, an appeal is in process.

Re: Re: Letter for Health Care Providers

Beth, it certainly can't hurt to have the letter in your file, but I can guarantee you won't get SSDI based on myotonia congenita.

The most important letters will be from your doctors stating that your conditions make it impossible for you to have "gainful" employment, even if it's for minimum wage or a different job category than what you've done in the past. The conditions have to be listed in the disability guidebook and you have to meet the criteria. You can the guide on the Social Security website.

Myotonic muscular dystrophy is a given for disability based on their guidebook, but not MC. When I received my award it was based totally on the nerve damage and brain injury from West Nile Virus...the judge wouldn't even look at the information on MC.

Depression is a significant component for getting disability - many people I know who have fibromyalgia actually were awarded based on the severity of the depression, not the muscle pain. Tests that show abnormal ranges are objective and can't be argued with so that can be helpful.

The independent exams for SS are a joke. Focus on finding doctors who will help and get an attorney - they're only allowed to take a percentage of your award up to a certain amount and will help considerably with the process.

I represented myself, but between my lab tests, doctor letters and the way I looked there was not much question as to how sick I was. I was also registered with Vocational Rehabilitation and my counselor stated that I was very eager to be able to work again but just didn't have the ability at the time. That carried a lot of weight with the judge.

In Colorado you have a hearing after one denial...in other states you have to go through two denials first. By that time a couple of years could have gone by . Hopefully you won't have to wait that long -

Jan