Hoping for some answers to explain twitching, tightness, fatigue etc
This forum is for questions and support regarding neurology issues such as:
Alzheimer's Disease,
ALS,
Autism, Brain Cancer,
Cerebral Palsy, Chronic Pain,
Epilepsy,
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I ran out of space before I could thank you for this service! (Concision isn't exactly my strong-point- sorry. But I did want to make sure I got in all the info you might need.) In any case, thanks! I'd be bouncing off the walls with ALS worry were it not for your site and a few others. (Unfortunately, MS still has me quite nervous.) Best, Dave
Thanks for your reply. I have to talk in French with my doctors here, so I'm at a bit of a loss as to how to explain "ESR", "CRP", "electrolyte panel" and the like. I think they've done CRP (I suspect it's ProtŽine c-rŽactive in French - it was normal) but I don't know about the others. Could you tell me what these abbreviations stand for, and what's included in a complete "panel"? More than Na, Ca, K, rbcMg, and Phosphorus? All that's been done, as has CK, gamma GT, creatinine, sedimentation rate and adolase. All OK. My GP told me these tests ruled out most muscle diseases (as opposed to nerve) - is that what you were referring to when you mentioned metabolic disorders, or are they in another category, with different tests? I see nothing in my test records that looks like "rheumatoid factor" or "anti-nuclear antibody" - what sorts of illnesses do these test for?
I doubt the fascics etc are exercize-induced after several complete breaks from physical activity lasting up to ten days since September - no effect on symptoms. I've dimished physical activity by maybe 80% since September and things have gotten steadily worse.
Thanks again. Wish I were in Cleveland!
Best, dave
(Try a Google search on these tests if you want to learn more. Also the National Library of Medicine has some decent information: http://www.nlm.nih.gov/hinfo.html)
I can understand your frustration at not being able to exercise; I went through the same thing. It can also be frustrating to be very healthy-looking and to be complaining about "only" being able to run for 30 minutes-- sometimes the response you get is dismissive because such ability is already above average. The thing is, it's abnormally low for you! Not all doctors will understand this because they won't be thinking of you as an individual.
Hang in there and stick it out to get a full diagnosis. Keep in mind that the long time it's taking will probably not hurt your health. A matter of a few months in diagnosing these diseasese will not make a difference in the long run (only in the short run in your level of impatience!). I hope you will get an answer soon.
You might check into the Lyme a little further, it is common to have a negative Lyme test especially if it was an Elisa. I have a sister who has chronic Lyme , she started out with symptoms similar to yours. It is a tough disease to diagnose a lot of lyme patients have Fibromyalga, Epstein Barr, Chronic fatigue Syndrome and many other symptoms. It took 3 years to figure out what was wrong with her and I do not like to see anyone suffer the way she has. Life will never be the same for her again. She even looks like an entirely different person. Trust me it is worth checking out again. Lyme is very controversial in the states as to treatment etc but probably the best info we have seen comes from Dr. Joseph Burrascano. You can locate DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES by JOSEPH J. BURRASCANO JR., M.D. at
http://www.ilads.org/burrascano_1102.htm#diag2
Good luck, I hope you find your answers.
I'd just like to thank everyone for the comments, information and encouragement.
BTW, I AM pushing on the lyme - I called the lab that did the test and when the guy heard my American accent he said "Oops, is it possible you caught it in the US?" When I said yeah, I went to college in western Mass and went backpacking in Yosemite last year he said "Well, we'll have to do different Western blot tests on your blood because we don't know what strain you have and just test for the local stuff the first time 'round." Just goes to show that being a bit pro-active about this stuff can improve the diagnostic process (and I hope the results too).
Best to all,
dave