Thank you for responding. As you can see I make mistakes while writing. I wrote that note as I did my nurse's note. Casually, thinking I had wrote everything correctly. This bothers me. I feel like I have to justify myself and tell you I graduated second in my nursing classes.

I have taken Cipro and Levaquin the last 2-3 years for sinus, bronchitis, and urinary tract infections. I was diagnosed with carpal tunnel by a nerve conduction test in Dec 2005. I was surprised because I had no symptoms at that time.

I have always thought that I could have Fibromyalgia but not one doctor ever mentioned it. Many other nurses have, though.

Also, I have tried Neurontin up to 1500mg a day without any decrease in pain.

You know what made me pursue what was happening to me? Unrelenting leftsided chest pain in June 2005.

My present Neurologist, who states he believes everything I say, told me that I am one of those rare cases that Myotonia will keep on progressing when it shouldn't. He has no answers for me. I do hope tomorrow will bring me some answers because I am very tired of searching.

By the way, my parents and my 3 sisters do not have these symptoms. I sent out a letter to all relatives I knew and no one knew what I was talking about, just one Aunt has difficulty swallowing and no other symptoms.

Thanks again,
JUDY

Where was your MC DNA analysis done?

Judy,

Don't ever feel like you have to justify yourself or worry about your writing - sometimes I read my posts and wonder where my brain was :-) Lois is a great nurse and has had the same frustrations as you're going through. I'm sure she'll chime in here. We're glad to have your unique perspective and solving your pain mysteries could help many others.

The quinoloine antibiotics might be a real clue as to some of the pain. If you do a search on Google you'll find a ton of information about the potential problems. It might be good to go armed with that to your appointment tomorrow.

Sorry the Neurontin didn't help. I can't take any painkillers (not even baby aspirin) so I'm afraid I'm not much good when it comes to personal experience. Heat is the best pain relief for me. There is a company called Comfort House that sells heated mattress pads that are heavenly for someone with myotonia and chronic pain.

By the way, my chest pain was caused by dislocated ribs. Once those were finally put back in place the chest and abdominal pain improved dramatically. If you did much lifting as a nurse you could have some undiagnosed rib issues. If you want to do a search look for slipped or slipping rib syndrome. About 10% of GI symptoms are caused by this but it's not obvious on any x-rays and doctors don't seem to know much about it.

You mentioned the carpal tunnel showing up before you even had pain. That really sounds like a disc injury in your neck...again, x-rays, MRIs and scans don't always show up the root cause of the damage. I had the same diagnosis at first and wore wrist braces, etc, but it wasn't until we started addressing my neck (C-4 to C-5) that it went away. Physical therapy clinics that have the MedX equipment (for lumbar and cervical extension) carry a new machine that can really help with both low back and neck nerve problems. Nursing can really take a toll over the years because of all the lifting from different positions.

I do hope your rheumatologist believes in fibromyalgia. If not, find a fibromyalgia support group in your area, get a recommendation and try again :-) A lot of what you describe sounds like the symptoms of paramyotonia congenita, but since you've already gotten the DNA results for Thomsen's it's not very likely you would have both.

One more thought - if you haven't had thyroid function thoroughly checked have your doctor do that. If I don't take thyroid every day (I use Thyrolar which is a synthetic T3/T4 combination) I can hardly function. Same goes for my husband who has myofascial pain syndrome - it makes a huge difference in his muscle pain even though his blood tests are almost normal. If your body temperature is running low maybe a doctor will give you a trial at a low dose. The colder we are, the more the chloride channel is inhibited.

Sorry to write a book - I just hate to see anyone suffer and hope something will help.

Jan