The two you mentioned have been rules out on me including-hiv, lupus,menigintis,encephilitis--but still standing in limbo about what is wrong! it is very depressing and scary to not know what is wrong with you and have so much pain constantly which also can't be explained!
It's a living H???! If I hadn't seen the lession in my brain for myself I would actually think I'm nuts! Which is still a possiblity!!!
I go again for my next MRI head and spine Oct 28 and back to see Neuro for results in Nov.
Sorry I haven't written in awhile but just can't explain it just not my self these days.
Take care and love to all
ladygraycloud/Suzanne
Hey Merely Me.... I'm living in limbo, myself, and the worse my symptoms get the harder it is. I'm a 27 year old female living in New Jersey, but originally from the Seattle area. I'm right in that age group with a family heritage that makes me most susceptible to MS, and having done research on the internet my symptoms are textbook:
- bladder dysfunction
- numbness/tingling in extremities (and sometimes in my face)
- vertigo (unexplained by a previous neurologist - who ruled out meniere's disease)
- coordination problems
- paralysis (temporary) in my arms
- chronic headaches
- depression
- CHRONIC FATIGUE!
And yet, my recent MRI (taken 2 weeks ago) was perfectly normal. Now that's limbo. I'm a PhD. student (studying religious studies) and so my insurance is from the university here in NJ, so not the greatest. I'm so limited on what I can afford in terms of testing - it costs me out of my own pocket $250 every time I go to the neurologist. Now that's limbo. I feel in my GUT this is MS, but with a clear MRI, my neurologist seems to seriously doubt it, but he specializes in migraines, not MS. Besides, he only wants to see me every 3-5 months, so obviously he doesn't think there's anything seriously wrong with me. I'm considering trying to find a new neurologist (my 3rd in 4 years), but I'm not sure it'll help. This limbo thing is terrifying, exhausting (for someone who's already exhausted all the time), and lonely. So I turn to the internet to find out anything and everything I can.
I've looked at everything on mimic MS diseases and nothing seems to quite fit like MS does.
Anyway, Merely Me, thanks for posting. It's good to know I'm not the only one that hangs out in limbo for what seems like will be eternity.
~CR in New Jersey
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Hi Merely Me,
I initially went to the doctor with tremors and "ratchety" arm movement. I didn't associate the anxiety, depression, and memory problems I was having with the movement issues. I had an MRI that revealed white matter disease and a CT scan with enhancing dye that revealed an "active lesion". The radiologist/imaging technician thought "MS" right away but my neurologist has been on a crusade to eliminate MS as a possibility.
After the MRI my neurologist told me not to worry about MS because it might "only" be HIV, Lyme disease, syphillus, or something else. (As if those other things were "good" and MS was "bad".)
Lyme disease actually kind of made sense because I enjoy hiking and camping and I've had ticks several times before. I've been to a lot of places with deer ticks and mice.
I think the various tests I've had have ruled out everything I can think of except MS. Tomorrow I have my first lumbar puncture and maybe that will turn up something. My symptoms have not been very bad lately except for tremor and double-vision, so I don't feel as nervous about all this as I did a few months ago.
Thanks,
KJ