Hi all, I think I've posted here in the past, but I know it's been a long while. I also post on the Fibromyalgia and Lyme Disease boards.
I've had problems for over 3.5 years now. I was bitten by a tick and had a fairly large sized rash from it not long before I got "sick", since then tests have been done to rule out Lyme Disease, although I've been informed that these tests aren't always accurate.
These are my problems..
Constant pain in the joints and muscles (RA tests were negative).. the pain is soooooo much worse in the heat and humidity - it seems most Fibro patients are better with heat than cold. I'm just the opposite. When the humidity is high, I can barely move.
Muscle tightness for no reason.. mostly in my calves. Sometimes I can barely straighten my legs.
Numbness/pins and needles in both arms for no apparent reason. Also in thighs at times. It usually lasts a few hours, then gradually goes away.
VERY clumsy.. I'm always dropping things and sometimes just can't get my hands to do what I want them to do.
Hard to walk sometimes.. my knees just give out or my legs feel unbelieveably heavy.
Constant muscle twitching. I mean I can't go 2 minutes without something twitching somewhere. Most of the time I have twitches going on in more than one area at a time. Some twitches last for days and some last for weeks. I have twitches in some odd areas such as inside my ear (I can actually hear it), inside the umm "genital area".. you name it, it's twitched at some point or other.
Shaking hands.. it's not as noticeable until I'm trying to do something like tie my shoe or handle something small. (doc called it "intention tremor" or something like that)
Migraines that last for 3-4 days.
Electric shock like pains in my head and face. (was told occipital neuralgia)
Extreme sensitive areas on my skin at times. Just to have my shirt on hurts my upper back on some days. My scalp tends to be the worst. It's one small area going from the right upper side of my forehead and back about 3 inches. Just to touch my hair sends waves of pain through my scalp.
I know there's more, but I can't think of everything. I was told in the beginning that it COULD be MS, but it was highly unlikely, and honestly it hasn't been mentioned since then. Mostly, they just say Fibromyalgia and the rheumatologist I saw was a complete butthead (that's putting it very mildly).
The only tests that I have had were blood tests and one cat scan of my brain. The only abnormalities found were low platelets (idiopathic thrombocytopenia -not sure of spelling there). Lupus tests were negative. That's it. No MRI - never even been mentioned.
So what all tests are usually done for MS? I'm SOOOOOOOO sick of being in limbo here and I hate bringing up the want for certain tests to my doc, but I feel like I'm going to have to really start taking charge here if I want anything done. It's gotten old and it's just making me madder every day.
I don't WANT to have MS or Lupus or Lyme or hell, ANYTHING, but I know that something is waaaay wrong. I used to be so active, always felt just fine.. something happened somewhere and for some reason they aren't finding it.
Tests for MS can include MRI scan, Lumber Punture (to rule out certain things) and a series of eye tests. Unfortuntely, it's about ruling out just about everything else before MS is diagnosed. I'm sorry to hear about your health issues but know that there are people out there who know how you feel....
I am also wandering about the tests and if a Myelogram would detect MS since it includes a spinal tap. I have heard that a spinal tap is necessary to test for MS and also an EMG. Does anyone know about a myelogram?
My mom had a spinal done to test for her MS. She said it was extremely painful (for her, anyway), which makes me a bit nervous to be tested for it myself. But I have a lot of the same symptoms she does. Otherwise, I can't remember what else they did to test her.