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Just released from the hospital-Fibro the cause, they said

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Old 04-13-2007, 05:14 AM   #1
Join Date: Feb 2004
Location: NJ
Posts: 51
LupieOne HB User
Just released from the hospital-Fibro the cause, they said

Hi all.
This past Tuesday morn, I wound up being admitted to the hospital via the er, because of my worsening cognitive problems, and hands shaking and unsteady balance, numbness and tingling, etc. Got released last night. Had a bunch of tests-mri, ct scan, bloodwork, EEG, Doppler of carotid arteries...My Neuro said he thinks its all my Fibro flared up pretty bad-since the tests they gave me are coming out neg. and Fibro actually causes many neuro problems like Ive been having, like the memory so bad, attention problems, the cognitive problems, slurirng speech, spelling, talking in a mumble, stumbling, balance and gait problems and even the trembling of my hands and pins and needles i get everywhere now...even down to the ringing in the ear!! I didn't realize just how fibro too, can affect neuro aspects like lupus does, I guess because I always focus more and research my Lupus more than my Fibro. But was surprised to find out just how much fibro can affect these areas too!

I had the EEG right before I left so don't have the results of that yet, but the mri and doppler of my carotid arteries were fine as was the ct scan. The Lupus is quiet now, according to blood work, so its gotta be the fibro-which makes sence because my rheumy said in Feb. that it was my fibro flared up and causing all the worse pain and problems then-so now, it got worse I guess, and made even more problems. I see my rheumy soon anyways and have to go back to the neuro soon-both rheumatologists and neurologists treat people with fibro more thn any other doctor, so i guess we'll see what rheumy says and then neuro as far as the best treatment for this relyy bad flare up.

I guess if the eeg comes out okay too, i just gotta wait and see what the docs say and want to do now. I have been feeling so crappy lately and was due for more ear tests on Tuesday, (so far, ear/hearing checked out fine at visit to ENT a month ago) but I was getting so much worse, it was time to get seen asap and not by an ENT. the symptoms I've been having got too scary to put it off any longer and knew that the trembling and cognitive problems are not from any ear problem! lol
I have to call today to reschedual the ear tests-(ENG, ABR and ECHO G)because ENT still wnats them done. And who knows maybe there is a problem in there that its just coincidence that its happening with the other problems going on too. All I know is something is wrong and its scary and worrisome to have my mind and body and with my balance and the trembling of my hands getting worse and worse. Guess time will tell and results too.


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Old 04-14-2007, 04:16 PM   #2
Join Date: Jan 2007
Location: ny
Posts: 78
marie59 HB User
Re: Just released from the hospital-Fibro the cuaue, they said

sorry your not feeling well .i have lupus also and along with fibro,raynauds,and DDD.being sick sucks i hope you start to feel better soon. i have alot of the things you decribe.hugs to marie

Old 04-15-2007, 07:55 PM   #3
Join Date: Mar 2007
Location: USA
Posts: 486
sarah92202 HB User
Re: Just released from the hospital-Fibro the cuaue, they said

Cathy, you really need to go on the Lyme Board and look at the symptoms for Lyme disease, you live in NJ which has the highest incidence of Lyme in the country, you are having too many symptoms that don't coincide with fibro, and knowing Lyme the way that I do, I would seriously say that there is a major chance that is your problem. I am not doc, but have researched Lyme through and through and also Fibro and Lupus, being misdaig. for 8 years gives one a lot of time to research. Lyme is a very serious and dangerous disease and needs to be treated immediately, it can cause all types of neurological problems, dizzyness, ringing in ears, vertigo, tingling and numbness in arms and legs, fatigue, joint pain, rashes, light sensetivity, head aches, breathlessness, and alot of other symptoms. Please look on the Lyme board at the sticky, and if you decide to get tested for Lyme don't let your doc's test you by any other lab than Igenex, it would be best to make an appt. with an LLMD LYme Literate MD, there are a list of excellent LLMD's on the Lyme board that are in NJ, NY & CT. I live in Texas, but my son and I fly to CT to see our Doc's, the disease is so prominent up there, the odc's are the best in the country. Good luck and God Bless

Old 04-18-2007, 07:23 AM   #4
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Re: Just released from the hospital-Fibro the cuaue, they said

morning cathy,
sounds like you are having one huge flare up. i also have fibro and lupus. they mimic each other so well. you mentioned waiting to see what the doc wants to do next. what do you want done? always remember you can say no to any treatment.
you know and i know there really is nothing science can do for us, except make us as comfortable as possible. finding a balance of meds and exercise along with a healthy diet really is all we have. ourselves. doctors are nice and all, but ultimately we must care for ourselves. i see the sad look in my doctors eyes. i know she wishes she had a magic pill. i also know there isn't one. there is only me. so i force myself to exercise. eating is an issue. no feelings of hunger so i forget to eat.
i still get the trembling and stumbling and dizzy and all that you experience. since i have had 3 strokes each time it happens i ask my body, stroke or fibro or lupus? i just passed my one year marker on the last stroke. yipeeee!
what i learned to do was relax with it all. it is what it is and worry will not change it one bit. worry will make it worse. never forget fibro loves to eat your fear and vomit up pain, horrible pain.
not worth it.

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