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Skimmer
04-26-2007, 10:59 PM
Hi everyone. I am lurking on this board, trying to find out what's wrong with my sister. She is having the numbness, heavy legs and arms and having trouble walking. It came on quite suddenly - so much so, that she went to the ER thinking she might be having a stroke or heart attack!! Well, they ruled all of that out. So far, she's had MRI, MRA, EKG, CAT Scan, sono of carotid artery, MRI of lumbar & thoracic, stress test (medically induced because she couldn't walk fast enough to get her heart rate up) and she's seen an opthamologist because this all started with her vision going blurry while driving one day. She had a retinal hemorrage in her eye. Sooooo - after all that - and all the tests coming back negative, they have told her to just sit tight and come back in 2 weeks and see if it's gotten any better? She has been to a neurologist too. She's beside herself....and she is now giving up driving, because she can't feel whether she's pushing down on the accellerator or not. She described her legs and arms as "walking through taffy". I guess the last thing to do would be to get the spinal tap done to get a definite diagnosis for MS? They were also thinking it might be a case of Guilliane's Barre? She is also waking up in the middle of the night with a racing pulse - and that happened in the ER too - fine one minute, then a racing pulse the next, then back to fine. Does this sound like MS?? Thanks for all your posts - they really do help everyone....it's scary how many people are out there walking around in pain, with something wrong, and none of the doctor's can figure it out!! All of her tests are showing up that she's a healthy 47 year old woman...

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zandvoort
04-27-2007, 09:06 AM
wow- I am really sorry for the challenges your sister is facing. As you probably know, Guillan Berre is a disease that comes on pretty fast with similar symptoms you described so I am not surprised that is being discussed. It sounds like she is doing all the right things and having all the right tests. Not sure how long ago this happened, post sounded like just a few weeks. If so, it sounds like her doctors are being pretty agressive in determining the cause. Most people have to wait 6 weeks even to get an MRI appointment! and some do not get referred to a neurologist for much longer than that! I know it is hard and scary, not knowing what is hijacking your body, and waiting two weeks is hard. Luckily your sister obviously has tremendous support in you and that will be Sooooooo good for her. A caring support system who is trying to help with research, good- aggressive doctors...there is not much else you can do at this time.
Best wishes for a speedy resolution!
Deb:)

Bearygood
04-27-2007, 01:26 PM
Skimmer, best of luck to your sister. Please come back and post as you find out more information!

Skimmer
04-28-2007, 11:58 AM
Thanks Deb and Beary.....I will let you know how it turns out. It has only been a few weeks, so I guess she is lucky she is getting all her appointments and MRI's done so quickly. I don't know how people do it, the waiting would drive me crazy!!

Thanks again for writing back and I'll keep looking for an answer for her....

:angel:

KarmaCat
05-02-2007, 11:05 AM
They thought she might have Guillain-Barre and then let her go home??? Good grief. She needs to be monitored very closely, as GBS can in some cases affect the breathing muscles and/or the heart, so advanced care would be needed in that case. The condition can progress quickly, as well, so without monitoring, the situation could turn badly without much warning.

Your sister needs to get back to her neurologist or to the hospital and DEMAND to be admitted and monitored immediately.

I can't believe they didn't do a lumbar puncture already, with all the talk of GBS. She never should have been sent home until that was done.

It frustrates me to no end when people are sent home after they present with complaints like these. I had a horrible time being diagnosed as well and reached partial paralysis and almost stopped breathing before someone would take me seriously.

Good luck to your sister. Please keep us posted.

Skimmer
08-23-2007, 09:44 AM
I just wanted to post a follow-up reply since these boards are helpful to so many people. My sister was finally diagnosed with a mild case of Guilliane Barre - it never affected her breathing, thank goodness, but she was unable to drive or walk without some assistance. The final test was a lumbar puncture (spinal tap) which showed the protein in there. She thinks she got it from being vaccinated for TB - since she just started her nursing career again. She is doing therapy 3 times a week trying to get her muscle strength back - it will be a long recovery, but at least there's hope and she is getting stronger every day.

Thanks for listening and I hope this helps someone else......that's what's great about these boards!

Skimmer:jester:

zandvoort
08-23-2007, 05:12 PM
Thanks for following up Skimmer! You are right- The information is sooo helpful to people looking!:)





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