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Old 11-07-2011, 04:48 PM   #1
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fancykat HB User
CFS and Neurological/Oddball symptoms

Hi guys:
I've actually fallen off in keeping up with the new developments in the treatment of CFS. Mainly due to the fact that my physician, apparently the only one in the entire metropolitan area to specialize in it is no longer here. I've had a hell of a time trying to find a knowledgeable doctor. They all seem to want to throw this under the Fibro heading, and things that work for Fibro don't necessarily work for CFS and vice versa. Plus, it would be good to know if new symptoms I am getting are just part of the package or something else that could be going on. I am not new to this affliction. I was diagnosed with it in 1987 after a particularly nasty bout of mono.... never recovered, it seems. 2000 I was diagnosed with Fibro....

Anyway... I was wondering if there has been any new research regarding neurological symptoms and CFS. Also, is it common for sufferers to experience balance issues (feeling like you are on a boat in the middle of a stormy ocean), tremor (one side) and other stuff like numbness, smelling things that aren't there and blurry vision that comes and goes? Can a person have abnormalities on a neuro exam due to CFS?

Thanks for your input!
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Old 11-29-2011, 12:06 PM   #2
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Fibrobugsme HB UserFibrobugsme HB User
Re: CFS and Neurological/Oddball symptoms

Hi Fancykat,

I'm curious to know what types of neurological problems you're having. I've never been diagnosed with CFS but I was diagnosed with Fibro...not sure if I really have it or not. NONE of the drugs for it work for me at all. I have pain and inflammation but they can't really decide where it's coming from or why I have it. ?? They think it's autoimmue but they can't place it. I do have what I think could be neurological problems but they haven't been checked into yet...it's only been years...I guess they don't want to rush into anything LOL!! I get a sort of odd sensation around my ankles that seems to radiate up to my shins and up the sides of my lower legs. Someone said it could be from sciatica but no one has a definate reason for it or what to do to make it go away. Whatever it is, my ankles often "give out" and I think it's related to that as well. I have never had a real sense of balance and I have fallen a lot in my lifetime. I'm 60 years old now. I used to joke and say I needed a net around me to hold me up when I lose my balance. Right now I work with my GP who is almost useless and a Rheumatologist who is next to useless. Good doctors are just very hard to find. It's frustrating.
Take care,
Sharon

Quote:
Originally Posted by fancykat View Post
Hi guys:
I've actually fallen off in keeping up with the new developments in the treatment of CFS. Mainly due to the fact that my physician, apparently the only one in the entire metropolitan area to specialize in it is no longer here. I've had a hell of a time trying to find a knowledgeable doctor. They all seem to want to throw this under the Fibro heading, and things that work for Fibro don't necessarily work for CFS and vice versa. Plus, it would be good to know if new symptoms I am getting are just part of the package or something else that could be going on. I am not new to this affliction. I was diagnosed with it in 1987 after a particularly nasty bout of mono.... never recovered, it seems. 2000 I was diagnosed with Fibro....

Anyway... I was wondering if there has been any new research regarding neurological symptoms and CFS. Also, is it common for sufferers to experience balance issues (feeling like you are on a boat in the middle of a stormy ocean), tremor (one side) and other stuff like numbness, smelling things that aren't there and blurry vision that comes and goes? Can a person have abnormalities on a neuro exam due to CFS?

Thanks for your input!
Blessings

 
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Old 12-04-2011, 11:33 AM   #3
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Re: CFS and Neurological/Oddball symptoms

I have had a left hand tremor, balance issues, right sided weakness and tempoary paralysis in my fingers and after a lot of perplexed doctors I was told I have Concersion disorder and dissociative symptoms. I was mostly dx'ed with this as I have mh dx'es which pre-dated my pain issues. (fibro/me symptoms on started 3 years ago, been nuttier than a snickers bar for over a decade).
However i do not fully agree with this - and feel that Lyme's much better fits my cycle of symptoms.
I think it is worht looking at conversion snydrome though as i know it is very under-diagnosed. It is worth looking into Lymes too and if it is affecting you to a great degree get yourself to as many doctors as you can until you find another good one.
Sorry to bang on about my symptoms but i thought it might give a degree of help.
I really hope things improve for you soon.
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Old 03-28-2012, 12:56 PM   #4
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Re: CFS and Neurological/Oddball symptoms

ARE YOU MY TWIN?????
Ive had CFS since about the same time and was also to Fibro then as well which that far back didn't exist. I'VE THE MOST CARING DR ON THE FACE OF THIS EARTH!!!! I've been seeing him for the last 10 yrs and this more man is at his wits end and still hasn't given up! I've seen every specialist, visited several university hospitals and been searching on the internet for years myself.
About 4 yrs ago I had every childhood disease you can test for with bloodwork show positive in a 12m period. I've had the same symptoms as you as well and I honestly believe it has alot to do with the overall fatigue our bodies are fighting. (Watch your glucose levels with the vision issues. I started having issues with hypoglycemia that seemed to concide with my worst days which impacts vision).
I will tell you the only thing that ever truly help me was A DEEP TISSUE MASSAGE! Some insurance companies will cover this cost. I get a day or two of relief and that makes it worth it for me.

I wish you luck and hope you find relief soon!

 
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