I am sorry Beth that this has happened to you again. I know that the Doctors seem very interested at the first visit, and then at the second visit the doctors are not as interested and it goes sour for us. I know Jan would be talking to you as soon as she is well. Don't let go of HOPE. Judy

Not knowing is often just as bad as the disease itself.

If your not happy with your current Dr's or your dx is stalled move on; Ive done this many times. Since these diseases are so rare its a matter of finding the right physician to get a dx.

An EMG is just a diagnostic tool providing a suggestive pathway for a dx; DNA tests seem to be the gold standard today but they too have there problems ie looking for known mutations. An EMG examination is dependent upon the ability of the examiner; a crucial limitation. I know of several people with multiple EMG's done where the results are all different.

The one hope I had. And the insurance co. would not authorize the DNA tests to be done....So, here I am right back at square one!
Now I have to wait and see what my Dr. wants to do from here.
Your right the un-knowing is worse than the knowing. This has consumed my life---if that is what you want to call it "LIFE" I sure feel like I dont have one anymore.
My PCP wants me to consider the (and my neurologist) fact that in conjuction with Muscular Dystropy that I could have Fibromyalgia and /or Chronic Fatique Syndrome.
I honestly dont know what to do or where to go from here....I have been sick for so long. I guess just be patient and wait and see what other tests they may be able to do. FRUSTRATING to say the least.
Thanks for listening.
At least I know who reads this understands and has probably been in my shoes or is in them right now.

Has your neurologist tried to see if the MDA would cover the DNA tests?
Its worth a try.

Beth, I know how you feel! In a weird way, I too was looking for a positive dx when I had my genetic tests done because I didn't want everyone to say the pain was in my head...or that I was making a big deal out of some small symptoms. I did end up having positive genetic testing for MC but I still feel that I have more pain than would be associated with MC so I am looking for a coexistin illness. I don't WANT to be in pain...I just want a dx to explain why I have the pain.
Also, FYI, I am one of those people that had two EMG's with completely different readings. One showed myotonia (which makes sense with the MC) and the other showed neuropathy.
Good luck, hang in there!

Beth,

My insurance denied DNA testing, too. I hope I state this correctly. Could not find paperwork. Athena Labs did my DNA testing. They sent me a form stating that if I would pay 20% of the bill upfront then that would be all that I owed. The first bill was $1450.00 so I paid them $290.00 and the second DNA test was $1350.00, so I owed $270.00. I did this. By accident, I learned 6 months later that my insurance had paid for the first DNA test. (You would think I would have been sent a notification.)
You would of thought that Athena would have sent my money back to me! So, I contacted Athena and was told it was overlooked. (The story of my life) But, Athena did send me my money back on the first test.

My husband read your story, Jody's, and Shannon's. He said, "They sound just like you!"

I truly believe that MC is the cause of all my pain. That MC induces Myofasical Pain and minics Fibromyalgia and any other pain I may have.

I went to the Mayo Clinic because I am not typical of the textbook Myotonia (just like all of you). I had to find out could I have another illness in addition to MC. Without hesitation (and, of course, saving the doctor from spending toooo much time with me) I was told by the only MD with a PhD at Mayo Clinic, "NO, I have seen it this bad." End of visit.
Recommended Mexiletine or Dilantin. I spent a great deal of my savings to be told that.

I believe that doctors don't know how to treat this illness.

At one time My Dr. did mention that the DNA testing could be covered by the MDA---that is when he spoke of testing me for Periodic Paraylsis/Paramyotonia congentia----He ended up going for the MD1 & MD2 because of the pain I am in and those diseases coinside with alot of pain (text book wise anyway) So, Maybe with part of my insurance and the other part the MDA---that might work. I guess I will just have to wait (story of my life) and see what the Dr. says.
I also was considering going to the Mayo Clinic too, but after the story Judy tells, maybe I wont put myself up for a big time let down. I have had enough of that over the years.
I am going to be seeing a chronic pain specialist as well as a rhuematologist again....I also have a sleep study scheduled...because they think I might have sleep apnea.
And last but not least a Therapist.....because my Dr. also thinks that my depression and Anxiety are a big problem and that it could be making my MD much worse.
Another kind way of saying its all in your head!
Trust me I have struggled with that possibility.....of it all being in my head.....and I have come to the realization that it is "NOT".

Beth,

It is not in our heads. We should not have to justify ourselves but-- I find that I do. BUT, realy, and truly (we know) we shouldn't have to justify ourselves.

Again, that is why bringing as much information to every doctor as you can will ultimate force them to acknowledge that you have an actual medical condition, and pursue its diagnosis. Another thing you can do, which many of us don't like to do, but it's effective, is to mention that you will write a letter to your insurance company, medical group, and state medical society, to report that the physician is dismissive of your symptoms, and unwilling to do diagnostic tests which are recommended for the suspected conditions. They usually will be so surprised to find a patient is smart enough, and proactive enough to know their rights, that they will comply asap. lois

Hi Beth,
I seem to have some of the same issues as you. I have too much yeast in my body. That, on top of the MC, causes debilitating fatigue. I've been cutting out sugar, yeast breads, wine, mushrooms, and aged cheeses, and it has helped me so very much. SUGAR is a very big No No. If you have fatigue, take a very good look at your diet and watch for high fructose corn syrup hidden in foods. It gives me the same problems as sugar. If you stay with Jan's diet on the website, I think it might help: www.myotoniacongenita.org. There is also a good book by Dr. Don Colbert, I think it's called, "What you don't know may be killing you." Also, you may want to check out the websie www.drmartingallagher.com. He's an M.D., but also a chiropractor who uses a wholistic approach to medicine. He has written a book called "Medicine for the 21st Century." Diet is everything, I believe, Beth. The wrong foods can wreak havoc with your body. I hope this helps. Mary

If you think about baking bread, the ingredient which ACTIVATES yeast is sugar! It feeds and grows on sugars. Another thing you can do to help minimize yeast's effect on you is to add yogurt and apple cider vinegar to your diet. The bacilli in yogurt and the acidifying nature of the vinegar help to neutralize yeast. You want to use plain, or at least sugar-free, yogurt (some people say they don't like it, but some of the "health food" brands taste enough like sour cream that you can use them on baked potatoes, chili, tacos, etc., or even a dollop with some sunflower seeds or tomato. Use a natural cider vinegar, too - try it as part of an olive oil and vinegar salad dressing, or mix a teaspoon in some juice or lemon water... it's an acquired taste, but actually pretty refreshing! An added benefit of the cider vinegar is that it seems to help arthritis a bit! Lois

This kept me up half the night, but I was too lazy to get up and correct my error! What I meant to say is that Cider vinegar is Alkalinizing (sugar is quite acidic, and yeasts like that). Making your body even just slightly more alkaline makes the environment much less appealing to yeasts. Sorry for my sloppy thinking last night! Here are a couple of websites to learn more about alkaline foods, which most people don't get enough of, relative to their acid intake...
http://www.thewolfeclinic.com/acidalkfoods.html
http://home.bluegrass.net/~jclark/alkaline_foods.htm
http://www.greatestherbsonearth.com/articles/acid_alkaline.htm
There are others, but if you're interested, it's a place to start! Lois

and a couple for cider vinegar's benefits:
http://www.naturodoc.com/library/lifestyle/umeboshi_vinegar.htm
http://ezinearticles.com/?Vinegar-and-Honey-Remedy&id=415064
http://altmedicine.about.com/od/applecidervinegardiet/a/applecidervineg.htm
: ) lois

Hi Lois,
Your info has been so helpful to me. Thank you!! I hope it helps you too, "Still frustrated in Arizona." No sugar, no yeast of any kind, etc. has made all the difference for me. I kept thinking things like, "Gee, it's just a little bit of sugar." But....add that little bit to the hidden sugars in foods, such as high fructose corn syrup that seems to be prevalent in so many foods nowadays, even breads and cereals, and the amount of sugar ingested at the end of the day is quite sizeable. Even now when I go out to dinner, I put no salad dressing on my salad. I ask for no sauces on my meat or fish. I don't know what's in it, and it's not worth it to me to feel bad all the time because I indulged in a "little bit" of sugar. I have gone 3 weeks now with no sugar or yeast products, and it has been life-changing.

Mary - I'm SO glad it was helpful! : ) lois