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Re: Just diagnosed.

Teresa - Somewhere in here (if you go to the web site, you'll find the link easier!) Jan has written up very good dietary guidelines. Some of the most important things are to stay away from caffeine, sugar, and excess potassium. Bananas are high in potassium. Also, highly processed foods aren't good for anyone, but a lot of people are very sensitive to the chemicals used to color, preserve, and otherwise process preserved meats, highly processed convenience foods, plus pesticides, cleaning products, and other chemicals.

You'll also want to read her information about anesthesia, and be sure to give a copy to your relatives, and to your doctors.

There's so much to learn about this fascinating condition - it's taking me years! Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Re: Just diagnosed.

Thanks Lois for all the good information. However I have another question. My doctor asked me if I had any trouble with choking. I assumed he ment while eating. I told him no more than others but I didn't think to mention this: sometimes especially when I first lay down at night I get this odd sensation of not being able to swallow. It's like my throat freezes up and I can't make myself swallow no matter how hard I try. This will eventually subside but my throat will feel like there is something stuck in it like a hard lump for a while. I have even woke up like this and it really can be a scarry thing both to me and my husband. Usually I can drink a few sips of something and it will help. Is this what he was talking about?
Thanks!!
Teresa

Type of Myotonia: un-known

Country: U.S.A.

Re: Just diagnosed.

In all likelihood, yes. There are a number of ways that swallowing can be affected. If you have not been swallowing or talking or moving your neck around much, your neck and throat muscles are relaxed, and can seize up when you first take a swallow - this is especially true if you take large bites or gulps, because the mass of food or liquid is a much greater stimulus than small bits. It is helpful, just as with stroke patients and others with compromised responses, to start with a couple of small swallows - also, if you nod your head a few times, and tuck your chin in for the first swallow, it helps prevent or minimize the feeling of something stuck in your esophagus.

Also, drinking icy cold liquids can trigger the muscles to tighten and spasm, so if you drink something very cold, make the first few sips small ones, and hold them in your mouth a couple of seconds, to take the icy chill of. Then you should be fine.

Sometimes, when you change positions, it can trigger muscle reactions because you are subtley using the muscles, even though you aren't thinking about it. When you lay down, your neck muscles all have to support your head, and hold it while it changes from upright to horizontal. The head is a heavy body part, and our neck muscles can certainly kink or spasm - and so can the internal muscles of the throat. Before you lay down, do a few mild neck rolls and stretches. If you do have that tightening reaction, remember that it only lasts a few seconds, and try to do calm deep breathing, slowly in through the nose, then blowing out through the mouth. It is an effective relaxation technique, and also helps minimize the sense of panic some folks can experience. lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Re: Just diagnosed.

Does anyone know if there is a connection between MC and Lupus? I have MC and my younger sister has Lupus.

Type of Myotonia: Not sure yet

Country: USA

Re: Just diagnosed.

There's no connection. MC is strictly a defect in the gene that controls the gating of the chloride channel in skeletal muscle.

However autoimmune conditions do tend to run in families, even if they manifest in different ways and as different diseases. For instance one may have lupus, one rheumatoid arthritis, and one thyroid disease.

Several gastroenterologists in my area immediately check lupus patients for celiac disease. Sometimes just getting on a gluten-free diet can reduce the inflammation so much that the lupus symptoms and inflammatory markers subside. You can start with blood tests, but the definitive test a tissue biopsy which can be done with an endoscopy or colonoscopy.

Jan

Type of Myotonia: Thomsen's MC

Country: US

Re: Just diagnosed.

Thanks for all the info. I will forward it to my sister. My family has a verity of autoimmune diseases. Quite a few of us have MC, my sister has Lupus and my Uncle has a slight case of MC and he also has Parkinson.

Type of Myotonia: Not sure yet

Country: USA

Re: Just diagnosed.

I was diagnosed with a lupus type illness twenty years ago. I had the positive ANA test, high sed rates, the whole nine yards. The rheumatologist put me on plaquanill and occasionally steroids for several years. Eventually my symptoms got better for several years. When I started having the pain and stiffness again to the poine I could no longer handle things myself, I went back to the same doctor. This time he ran all the same test. Nothing came back that indicated lupus. In fact the only test that came back elevated was my CVK test. The doctor put me through months of testing of all kinds. He finally did a muscle biopsy and that came back a little strange. He finally sent me to the rhemuatoligist I am currently seing and the first time I saw him he told me he thought I had MC. Sure enough the test proved he was correct. Now I wonded what my first diagnosis of lupus means since none of the test are showing anything like that now. Believe me this is all very frusterating.

Type of Myotonia: un-known

Country: U.S.A.

Re: Just diagnosed.

Teresa,

Some autoimmune type conditions can be set off by a viral infection or even something like lyme disease from a tick bite. Many look very similar to lupus at first as far as ANA, sed rate, etc but they do resolve over time as your body fights the infection and the inflammation is reduced.

That's amazing that a rheumatologist figured out the myotonia. Since it has been in your family for several generations it will most likely turn out to be Thomsen's, but it will be helpful to have the DNA testing to be sure.

Jan

Type of Myotonia: Thomsen's MC

Country: US

Re: Just diagnosed.

I'm sorry Jan. I ment neurologist. Some times I think they are wronge about MC not havng an affect on your thinnking. Something sure is affecting mine. I guess I'll have to stick to the blonde hair excuse.
Teresa

Type of Myotonia: un-known