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Old 07-01-2006, 04:43 PM   #1
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justme1972 HB User
Fibro???or MS

Hello. I am a 34 year old woman who is just exhausted from tying to figure out what is going on here. This has been going on since I had my first child 3 years ago and while most of my symptoms point to MS, I am lesion free and my GP and neuro feel it is not MS, so Fibro has been mentioned. I will try to be as brief as possible.
March /2003....3 weeks of pins/needles, anxiety,weakness(percieved only). Had MRI of brain and spine, evoked potential, etc and all was clear. DX's with post partum and post traumatic stress caused by severe trauma experienced at birth

Symptoms free until.......

July /2005..........no tolerance to heat, glare really bothered me from sun, chest pains, severe constipation for a few days, repeated episodes of thrush(oral)
August/2005.......a few days of fatigue like I never felt before, just tired in every possible place, brain fog, hard to catch breath sometimes, hot flashes

September/2005
-left eye starts twitching(eyelid) lasts a week, followed by....
-3 weeks of eye pain in left eye
-pins/needles, electrick shock sensations in legs , arms, hands, back, etcetc
-pains in head
-weakness in right hand
-burning in feet
-flu like symptoms-
-burning in spine alternating with numb sensation
-weakness in lower legs although still able to fully walk and function

Symptoms went away after a week, they waxed and waned and spread the entire time, never lasting more than a few minutes here and there with exception of eye pain

-Symptoms came back in october after a cold

November/2005...saw neuro who has Ms herself. Shesaid based on my symptoms she was pretty sure I had MS and that she would run some tests and start me on meds in january.

- All MRI's came back negative for lesions so receptionist called and said i didnt have to return. Couldnt even get a follow up appt.

Have suffered with bouts of these symptoms, a week here, a week there. Some days none at all, some days a whole day of tickly feet, parathesia(sp0 in feet and hand etc

The worst symptom has to be theatigue, it is truly dehabilitating and with a 3 year old and a 21 month old quite difficult at times to cope

My Gp wont send me anywhere else because he says it's not MS(although there are people who never show lesions). He says it's chronic fatigue or Fibro, which I hear can be the cop out for docs who are tired of looking.My balance can be off at times(not severely or noticable0. I get growing like pains in my legs and arms. Carpel tunnel pain in my wrist off and on. No pressure pain points that I know of. Just a general feeling of unwell. I seem to get these episodes after a few days of feeling fluish. I have had about 10 since september/2005. I have been tested for Lymes, celiac, HIV(I had many transfusions with pregnancies), thyroid, you name it. All fine.

So, I know you are not doctors but are experienced in all this stuff. have any of you with definite fibro experienced these symptoms. I just feel so helpless. It's it's fibro, then i will start to help myself deal with it, but teh fear exists that if it's MS I am sitting here like a sitting duck with no help from the medical community, and my worst fear is it progressing with me not able to help it, especially because my babies are so young.

Anyhow, if you got this far, I truly thank you for your advice.

Lost in limboland.......

 
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Old 07-02-2006, 04:48 AM   #2
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AussieTam HB User
Re: Fibro???or MS

My thoughts go out to you, they really do ...

I've been going through hell on and off myself when it comes to my health, especially crippling fatigue. I just plain don't have the energy to do things in my life, and it's the pits. Plus the pins and needles and all the other junk too.

MS is a really hard disease to pin down, and you're right, some people don't show lesions. I'm about to go through all the testing for MS and I am confused as well ... however, I offer this advice:

1) MS or not MS ... start to look at treatments for your various symptoms - I believe there are treatments available, even for fatigue
2) Consider seeing a rheumotologist re. fibromyalgia
3) Hang in there **hugs** if it IS MS, then it will show itself in all of it's ugliness eventually with a definitive symptom, such as optic neuritis.

Stay strong!!

Tam

 
Old 07-04-2006, 04:37 PM   #3
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JLYN HB User
Red face Re: Fibro???or MS

OMG! And I thought I was the only one stuck between a rock(MS)and a hard space (Fibro). I too have been 'testing' for MS. Tomorrow as a matter of fact I see the Neuro again...the one that told me I did not have MS after a brain MRI came back w/o lesions. No spinal MRI done. No contrast used. Now she wants to see me to make sure she is not 'missing something'...only because I keep presenting with symptoms... also, day after tomorrow I do a ENG test (???) Not really sure what that is about...balance I think...

My journey began last October as well....
Some days are so good...I often wonder if it is all in my head.
Then WHAMO, I am hit with a ton of bricks that include...incredible fatigue, low chronic back pain (that eat 800mg iburopen for like candy), shooting leg pain, numbness, feet buzzing (tingling), blurry double vision, with 3 bouts of Iritis (last 6 months), dizziness/balance issues, and did I mention that incredible fatigue??? The smallest chore can LAY me out....on those days!

I don't know if I have MS? and I don't know if I have fibro....the doc's have not mentioned anything to me regarding fibro, I have stumbled across this myself, researching my chronic symptoms on the good ol' internet! I guess it could be...?

I too have tested for EVERYTHING...Lupus, Diabetes, Rhem.Arthritis, even Sphyliss (sp?)...which I knew I better not have had! I do have Hashimoto's Thyroiditis and my levels have been checked and double checked...all is alright there...I take med's everyday to stay regulated.

I am very frustrated to the point of having a break down about it! I have cried in my GP's office and felt like a complete idiot. I feel weak going to the doc's and running down symptoms like it's a laundry list....I feel like I am copping out somehow....even though I KNOW how I feel sux...

My job is harder to manage, my life is harder to manage...
I feel SO SORRY that you too are dealing with pretty much the same thing as me....living in limbo land....
It sure ain't Disneyland...and forget about it being the 'happiest place on earth'...

When do you see your doc again?
I pray that you get answers..and soon! God speed!
I hope the month of JULY will be my time. I really just want to be validated in what I am feeling and begin some sort of treatment so I can begin to try and reclaim a portion of my old life back....? if that is possible!

Please keep me updated!
HUGS & Prays!
JLYN

 
Old 07-06-2006, 03:07 AM   #4
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Join Date: Jun 2006
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Posts: 124
AussieTam HB User
Re: Fibro???or MS

Yep Jlyn the Fibro/MS limbo land exists, and I have a feeling that there are a few fibromyalgia sufferers out there who don't present with the brain/spinal lesions at time of investigation.

Sigh.

I have my brain/spine MRI tomorrow and I'll just bet that I've got more time to spend in "LimboLand" ... and the real fun part of this?? Australian doctors don't put much stock in Fibromyalgia, so I might be left with NO diagnosis of any sort.
My GP is thinking MS and I know he doesn't have any other cards up his sleeve at this stage ... he didn't seem to think that an appt with a rheumie would even be necessary, he was talking instead of more neurologists!!

I just want some answers ... I'm 24 and I'm having SOOO much trouble walking...and the parasthesias hurts like a .... insert bad words here.

Hugs to all my friends in rainy LimboLand!!

Tam

 
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