Posted 12/5/2008 6:18 PM (GMT -7)
i have been posting in the fibro forum for a week or so now, but i have some questions that i wanted to come here and ask, if that's ok? i'm really sorry for the length of this, but my story is a long and confusing one..
about 8 years ago, i woke up one morning with bell's palsy. i recovered from that almost completely (the corner of my mouth twitches when i blink, and i cannot make the "o" shape with my lips without my eye twitching..other than that, my bell's is gone) within six months and got on with my life. about a year after my recovery, i started noticing an achy, sensitive feeling on my skin, almost like i was bruised everywhere. i didn't have insurance at the time and so didn't go to the dr., and since it wasn't too painful or disruptive, i didn't really think about it. then about 5 years ago, i started having numbness and tingling in my hands, arms, legs, and feet. i also started feeling very tired and moody and the strange pains along my body started to become more pronounced. i went to my gp at the time and explained my symptoms. he ran a bunch of tests and ruled out lupus, rhemetoid (sp?) arthritis, diabetes, lyme disease, and heart disease. he then ordered an mri, which showed lesions on my brain. his ran another to be sure, and that too showed the lesions. his tentative diagnosis was that i had m.s., and i was placed on a 6 month (!) waiting list to see the local neurologist.
during that 6 months, some personal issues came up and my family and i ended up moving to florida briefly, so i never got into see a neurologist. (i also found out i was pregnant with my 3rd child at this time) the stay was brief, and we moved back to michigan when i was about 6 months pregnant. after the birth of my son, i started to feel so incredibly run down, way worse than before. the aching got more pronounced, and i started having shooting pains run through my body as well. i had insurance at the time and ended up being able to get in to see a neurologist. he ran another mri which showed my lesions were still there, but had not grown (or increased or however you would put that). he also did a series of in office tests where he checked my muscle strength, balance and coordination. apparently those were all fine (i have always been slightly clumsy, but have never experienced serious problems with balance and coordination) because he told me he didn't think i had m.s. when i asked him what the lesions were caused by, he shrugged and said maybe by some sort of infection.
shortly after this, i lost my job (i worked for a nationwide company who moved the office i was in to ohio..a little bit too much of a drive for me!) and so also lost my health insurance. i do have a local gp who lets me make payment plans, and so do have someone to see if i get sick, for bad symptoms, etc. but i have not been to see a specialist since i last saw the neurologist.
about 2 years(maybe 3? the years blend for me, sorry) ago, i found some information re: fibromyalgia online and thought maybe this was it. i took a list of symptoms and a list of my symptoms into my gp and asked her what she thought. she did a tender point test, and since i do have the tender spots all over on both sides, said yes, she thought it was fibro. however, as a gp her ability to help me was (and still is) limited. i can not afford to see a rhemy (i won't even try to spell that word..lol)
so that's where i am now. i know that the sore feeling, fatigue, "foggy head", gerd, ibs, and general aches and pains that i have are common fibro symptoms, but i have a couple of concerns about a few other of my symptoms. to make this short story reallly long (sorry again!), the ones that are concerning me are:
1. the pins/needles-i do have carpal tunnel, so that would explain the numbness in my hands and arms, but not the numbness in my feet. also, i get a very weird almost burning sensation on my hands and feet a lot. the only way i know how to explain it is it feels just like i'd gone outside and played in the snow without gloves or shoes on, then came inside and ran my hands and feet under super hot water. do you know that weird burning tingling feeling i mean? kind of numb, but not really. kind of burning, but not really. totally and completely creepy and painful in a dull way, though. (i really hope that makes sense...lol)
2. the shooting pains-almost like a jolt of electricity. i get them all over, but they seem most pronounced in my head, almost as if someone is zapping my skull with a cattle prod. the back of my head also feels very sore a lot, and very tender to the touch.
3. vision issues-my eyes get blurry sometimes, seemingly out of nowhere. also, if i look at something up close for a long period of time and then look at something far away, my vision gets almost fuzzy..not fuzzy as in black, just..fuzzy. does that make sense? also, although i was born with a severe "lazy eye" and am quite nearsighted, my optical exams all turn out normal for my history. oh and i have floaters constantly and they've never found a reason for that, either.
4. i lose words-as in i can't think of what i want to say. also i mix words up sometimes, like i will think one word, go to say another word, and end up saying a combination of the two.
5. my symptoms are much, much worse in hot, humid weather. summers are terrible for me, and i feel much better when it's cold outside (which seems to be the exact opposite of what other people on the fibro forum go through)
i don't really know what to do at this point. i know i should get this checked into further/possibly get a second neurologists opinion, but my husband and i make too much money to qualify for medicaid at this point (we live in michigan) and yet we do not make nearly enough to afford private health insurance (we run a business out of our home and also go to school, so we can't get insurance at work, obviously). i also can not afford the up front out of pocket costs that are involved with seeing a specialists when you are uninsured. so right now i am stuck in this limbo and not sure what to do..
i guess what i'm asking all of you is-do these symptoms sound like anything any of you experience? have any of you ever heard of lesions being caused by an infection? do any of you know if it's possible to have lesions without having m.s.?
i am sorry yet again for the length of this and i know you guys aren't doctors..(well, maybe some of you are :)), but i just wanted to get this out to some people who might have some tips, advice, thoughts?
i would GREATLY appreciate any information any of you could give me. thank you so much!