Looking for answers

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Looking for answers

Postby dictatedbydance » Sun Jun 21, 2009 9:48 pm

I've read that all symptoms are different but i was hoping there might be some clues to onset. One doctor believe i have fibromyalgia and thinks i should do no more testing. Another doctor believes i should get a brain scan. Recently lost my insurance.

My symptoms include vision problems (blobs of light, blurry vision), an extremely odd pain (tense and electircal, builds and goes away), chest pain, nausea, memory, concentration, etc. These symptoms have been building over years, worsening. Recently more have popped up- that are included above.

Fibromyalgia and ms have very similar symptoms but i thought maybe the most telling of ms symptoms might be the biggest clue. My walking has been a odd. Clumsy, more so when excited, but very bad. Dropping tons of things. My muscles seem to tense up, i usually don't notice. Seems like some of my pain comes from tensing up. But i guess i tense up from the pain and don't always notice? Idk. I deal. I usually put up with things and don't let it bother me.

Another thing for any of you that get any kind of pains. Do pain pills help?

Looking for any hints. Cause i'm paying out of pocket for this brain scan. Any clues will help. I'm leaning towards the brain scan because i fear this is what i have and they will be able to diagnose it that way. So please, whatever advise you can give i thank you.
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Postby peekaboo » Mon Jun 22, 2009 8:19 am

Your symptoms do sound alot like MS :cry: When i was first diagnosed, it was my MRI that clinched it. MRI's are very expensive. Do you live near NY, or Maryland? There are some clinical trials using MRI/MRV technology which you may be able to take advantage.
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Postby dictatedbydance » Mon Jun 22, 2009 5:02 pm

Yeah... worried that's what i have. I don't think fibromyalgia has as extreme symptoms as i've been having. Exercise (walking) is suppose to help also. Not in my case. I've been thinkink i need a brain scan just to be sure and got on here to for more assurance and prepare myself- study the treatments and disease more.

Wasn't sure if i was just thinking of the worse, which i tend to do, or my symptoms might be closely related. The doctor who said fibromyalgia said no on ms but he was adamant on diagnosing me without thinking twice (no more test he said).

I'll talk with the doctor who recommended the brain scan soon. Maybe she'll have some ideas. Don't live in those areas. Have an aunt in NYC that could house me for a visit... but wouldn't you have to have ms before entering most of these studies? I'll check it out. Hopefully, i can find one that needs someone in my situation. Didn't think of that. Good lead. Thanks for that one. The quicker i can get this all over with the better. These symptoms are ruthless somedays.

Thanks again.
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Postby peekaboo » Mon Jun 22, 2009 5:58 pm

dancer - my sister has fibro and her symptoms are more like sore muscles and intolerance to cold...fatigue too. Brain scans ie MRI's are good for detecting many of the issues regarding ms but MRV a higher does of MRI can show other things as well. ( I am a devout believer in the ccsvi theory. forum page down the forum list)

Regardless, good wishes to you

holly
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Postby dictatedbydance » Tue Jun 23, 2009 5:04 am

My aunt has fibromyalgia pretty bad, she has lots of symptoms but she has tons of problems sinus-wise, bone-wise... so it's hard to tell what's what with her. A lot of the symptoms are similar. Except the movement thing. But that could be me reacting to the pain..?

What exactly do you find similar? Do pain pills help nausea, weird pains and a little of other symptoms? Was the confusion over motor skills like mine?

Thanks Holly for your help... Been feeling dizzy looking into all of this. Helps to get anything. MRV i'm guessing is more expensive too. =/ Anyway. Might have found a diagnostic study... Doesn't look like people are looking for people who might have the disease, seems like they want only people who have already been diagnosed, but the one thing i found was vague.

[cough] I rant too often. Sorry. Again. Thank you.

If anyone else has some advise i'd greatly appreciate it.

~Sam
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Postby dictatedbydance » Wed Jun 24, 2009 6:33 am

Went to the specialist i've been seeing, a hematologist that checked for -everything- in my blood. Before symptoms were as serve as they are now. I keep going to her because she has a scientific mind, something i can relate to and something i think lacks in many doctors sadly. She has tons of questions and has a sound mind. I respect her judgement. And, turns out, her thoughts matches mine, yours (Holly's) suspicion.

Off to the neurologist i go. Although i feel like it's already true. Part of me holds out to the idea that it's psychological or something else. I'm really fighting the idea of it, but the thought is tenacious... multiple sclerosis. And to think how long i've probably have had it... the damage. Maybe i can just have uni-sclerosis. That wouldn't be so bad... i don't need the time telling portion of my brain. I'll turn into Billy Pilgrim though... which would be a nice change of pace. Things have been quite stuffy and linear.

I kid. Hm. This post seemed more like therapy than research of info. Well, either way, thank ya.

It was helpful.
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Postby reneelucia » Wed Jun 24, 2009 10:54 am

one more thing...the pain pills help but not completely with neuro pain. The opiates tend to help with arthritis and bone pain for me. The weird electrical pain is different. I wrap my hands or wear bicycle gloves to calm down my hands when they get that way. YOu can wrap almost any part of the body with a large ace bandage. Just seems to calm things down and if feels better
ps-your story is a great reminder as to why we need a public health plan...just my opinion
Renee
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Postby reneelucia » Wed Jun 24, 2009 11:03 am

oh no, I wrote this really long response and it disappeared. Briefly, the neurologists don't like to give an ms diagnosis until everything else is ruled out. Find out if the brain scan will rule out everything else. My experience was that even with a positive brain scan and spinal tap my neuro wouldn't give me the ms diagnosis because I had a rheumotologist who wouldn't let go of a "possible lupus" diagnosis. Answer....second opinion by another rheumotologist who ruled out lupus.
Fibromyalgia is still something that I have....allegedly but apparantly its ok to have fibromyalgia and ms.
How about a second opinion from someone who does a lot of ms?
Also,,,,start looking into whatever public health plans might be availabe in your state....ms is so expensive.....
Lets hope Obama doesn't completely sell us out...just my opinion. I sometimes think about moving to canada but being this sick, its hard to move around.
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Postby dictatedbydance » Thu Jun 25, 2009 12:46 am

Oops. should've told you what kind of pain pill- ultram, which works different than most pain pills. It effects serotonin. Which worries me. We don't know much about antidepressants and drugs like ultram, we just know they work... As to how it could be effecting whatever disease i have is troubling. Will have to do some research when i get a diagnosis. I think too much is my problem.

Already been tested for lupus. Hematologist checked that out. She thought fibromyalgia didn't make since with eye sight problems and progression of symptoms. MS was the only thing she thought it could be.

And yes, the health care system is terrible right now, but (sorry to get political) Obama can't be trusted. I voted for him. He's one smooth talker, but sadly it's all talk. He has hidden interest. We are all foolish to think politicians run our country. Wall street, corporations and the federal reserve are the ones calling the shots. So even if healthcare becomes universal i worry how they might make a buck off us. And what of all the people that have debt to hospitals like me and millions of Americans? Do we owe the government then? That's a lot tougher spot to be in... Sorry, you got me started. =P The world is falling apart at the hands of a few. I find it hard to ignore.
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Postby robbie » Thu Jun 25, 2009 6:35 am

Obama can't be trusted. I voted for him. He's one smooth talker, but sadly it's all talk. He has hidden interest. We are all foolish to think politicians run our country. Wall street, corporations and the federal reserve are the ones calling the shots. So even if healthcare becomes universal i worry how they might make a buck off us. And what of all the people that have debt to hospitals like me and millions of Americans? Do we owe the government then? That's a lot tougher spot to be in... Sorry, you got me started. =P The world is falling apart at the hands of a few. I find it hard to ignore.

that was well said...but i'm just canadian what do i know...
Had ms for over 19 years now.
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