i have some questions..

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SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 12/5/2008 6:18 PM (GMT -7)   
hi everyone,

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!

~danielle

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 12/5/2008 9:17 PM (GMT -7)   
Hi Danielle,
Sorry to hear of all you troubles. Yes, I recognise some of them - skin sensitivity varying from uncomfortable to agonising and intolerable. Shooting pains mine are like a hornets sting & mainly on my torso and legs and I found if I rub them hard its the only thing that helped. Since I got a baclofen pump for spasticity & the pain it caused these other pains have gone too. Blurry vision, I found good quality fish oil (its an anti inflammatory & really good for lots of things) took this away. Could try it and see if it helps. Word retrieval was really bad for 6 months then good for 12 years then bad again for a month then good again. Feel your pain & worry, hang in there & keep posting. :-)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 12/6/2008 7:21 AM (GMT -7)   

Hi SleepyBug,

Welcome to Healingwell.  I am not sure what you want here.  You receieved a tenative diagnosis from your gp years ago and you never followed up on it.  Now you have issues and no insurance.  You are in a tough spot to be sure.  Is it that you never beleived your diagnosis?  I would definitely follow up and at least find out what a neurologist has to say.  Many doctors believe your best defense against this disease is early and consistent treatment with a progression therapy like copaxone, rebif, betaseron or avonex. 

http://www.mult-sclerosis.org/diagnosingms.html

You definitely have our sympathy.  Your symptoms (the numbered symtpoms) are ones we can all relate to.  Obviously no one here is going to diagnose you, as there are many MS mimics.  I wish you the best of luck.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 12/6/2008 2:16 PM (GMT -7)   
thank you both for your responses! i am sorry if i wasn't very clear..

gretchen, i've never actually had an official ms diagnosis. i did get in to see a neurologist who did some strength and balance tests on me in his office and said he did not believe it was ms (i do not have muscle weakness or poor coordination, other than just being generally clumsy my whole life) the gp i have now said she thought i have fibro, but i can't follow up with any sort of specialist because of the lack of insurance. believe me, if i could follow up, i would!

i was merely giving some background and asking if anyone with an official ms diagnosis experiences any of the symptoms i have that don't seem to match up with the fibro. also, i do have the lesions on the brain, but the neurologist i saw said they could have been caused by an infection. i took his word for it, but now that i'm interacting with other fibromites, i'm starting to see some discrepencies between some of my symptoms and some of what they go through.

i am very sorry if i wasn't clear enough-i am definitely not thinking anyone here can diagnose me, i am just trying to get some information is all. i am trying very hard to get find a doctor around here who might listen to me enough to get me in to see someone on a tentative basis and see if that helps me get medicaid, but i really want to be armed with as much information as i can find.

thank you again for responding and for the link. i do really appreciate it!

~danielle

Iodine70
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 12/8/2008 12:27 AM (GMT -7)   
Hi,
SleepyBug
I truly felt like I wrote what you posted it sounds like what is going on with me almost word for word,Even the no Insurance,
Except my Body feels like its on fire almost 24 /7
And Im always in major pain.
I was told by one Doctor no signs of Ms and yes by another.
I truly am Struggling each and every day..
God luck and hope to chat more.

Fibromyalgia
RSD
IBS
ARTHRITIS
Major back problems and on and on......................................................

SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 12/8/2008 5:51 AM (GMT -7)   
hey! i just answered your thread on the fibro board:) it sounds like we have a lot in common, just wish it was for better reasons. i know the body on fire feeling-i get that so bad, too, especially in the legs.

we'll definitely have to chat more and swap stories-maybe there's some common thread between us that might help us both figure out what's going on with us!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 12/8/2008 7:13 AM (GMT -7)   
It is so neat when people meet here and can relate to each other and support each other.  Remember you can always do the live chat here at Healingwell.  Just pick a time when you are both willing to meet (make sure you discuss time differences).  Then at the chosen time you log on to chat.  You just click on the word "chat" that is located in the blue bar at the upper right of this page.  You choose a room (probably MS) then sign in.  Enjoy! The only other thing you have to remember is there are many members here and they might crash your party and want to join in. 

Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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