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Old 08-04-2005, 06:04 AM   #1
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gyrl293 HB User
Unhappy Anyone please?????????

I'm a 24/F who 17 day ago woke up and could not feel from her chest down ...I had my husband take me to the ER. Long story short I either have a really bad viral infection or MS. 50%-50% shot right now and no one is really saying much.
I'm very scared right now because I still have the band from chest down. It started off as a pins and needles feeling but that went away maybe the second day and has since been replaced with a very heavy feeling. I feel like someone gave me a wetsuite to wear that is about 5times too small and I really need to get out of it. Also my legs themselves just feel heavy. Like each weighs 500lbs. However my motor functions are normal I can stand on my tippy toes walk with one foot in front of the other stand with my feet togother eyes closed. All the good neuro tests.
My MRI's well my cervical showed one lesion, my brain and spine are clear. My EEG, EMG, EVP, and eye sight are all normal. My spinal tap showed monophyils and monosites......no olo bands.
Supposedly I went to the go to neuro guy on the east coast so...his tx plan was 2months off with lots of rest start on Rebif and I'm also taking Tobrmax to help with the banding feeling. But I was wondering if anyone eles out there with MS has any of these symptoms.....I'm an Operating Room Nurse so I've known some people with MS and even just reading the post on this message board....I seem to have very different things going on but maybe I don't and if don't I would really like to know. So please someone anyone help ......
Very confused and very scared ......

PS While in the hospital I was given high dose iv steroids followed by tappered dose oral for home with no change in my condition at all (I was actually life flighted to a major hospital from the small one I was at because my symptoms so closely mimiced Gillians Buiera)

 
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Old 08-04-2005, 06:52 AM   #2
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Join Date: May 2005
Location: Indiana
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KelliD HB User
Re: Anyone please?????????

Hi Gyrl293...

Being a nurse, I am sure you're more aware of MS and its effects than the average bear would be, so you know everyone's experience is different. While I have not experienced what you are feeling, I do have a friend whose first symptoms were very close to what you describe, and she does have MS.

I know it is scary...MS comes and goes with no warning. You never know when you're going to be blind-sided by it. Regardless of what it is that you're dealing with right now, try to take it slowly because the stress and worry are only going to aggravate your condition. Take it hour by hour if you need to and PLEASE keep visiting this board and writing often. We ALL know what the fear is like and it helps to be able to "talk" to others. You'll find much compassion and grace here...

 
Old 08-04-2005, 07:56 AM   #3
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beachlover247 HB User
Re: Anyone please?????????

Hi,

I have a friend who had a sudden onset similar to yours. They initiallly dx gillianbaret (sp?). They put her on IVIG therapy to get her immune system working better. She got a lot of her feeling back pretty quickly. She couldn't even turn in the bed at the time. That was about a year ago. Meanwhile, they changed their minds about dx. she's been to numberous doctors, had tons of tests, etc. etc. She endures a LOT of pain with hers. The last doc, a phisiologist, said he felt sure it was ms. She has since gone to my neurologist, who is a woman. I just think women docs are much more open to listen to us? Anyway, she has ordered all new tests. My friend is pretty bummed about that. She just had a lumbar p 4 months ago and now they want to do another one? Can you have too many of those? Whatever the case, I hope they find out soon what exactly is wrong so you can begin appropriate treatment. Take care and remember to let us know how you're doing. Sue

 
Old 08-04-2005, 08:09 AM   #4
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kchs1 HB User
Re: Anyone please?????????

SWEETIE I AM 25 AND KNOW ITS TOUGH!!! I KNOW NO ONE PERSONALLY WHO HAS MS BUT MYSELF. I HAVE NEVER HAD ANY OF THE SYMPTOMS YOU EXPRESSED. HOWEVER, I WISH I HAD NORMAL FUNCTION OF MY MOTOR SKILLS AND NORMAL SIGHT. YOU ARE BLESSED.

AS ONE OF MY MOMS HERE ON THIS BOARD, KELLI, SAID TAKE IT HOUR BY HOUR AND DON'T STRESS YOURSELF!!

BEING SCARED IS ANOTHER PART OF MS. YOU NEVER KNOW WHAT COMES NEXT, OR WHEN IT COMES. I JUST SAY WHAT NEXT??!!

I HAVE HAD MS SINCE THE AGE OF 20 WITHOUT KNOWING OR HAVING A SYMPTOM. I DEVELOPED CATARAH-CORNEAS 3 YRS AGO(23) BUT THOUGHT NOTHING CAUSE I'VE WORN GLASSES FROM 12. 2YRS LATER, NOW AT 25. IN FEB EYE DR DXED 2 MORE EYE DISEASES, STILL THOUGHT NOTHING. UNTIL APRIL... KNEW SOMETHING WAS WRONG. WENT ON VAC IN MAY. CAME BACK WORST!! I WAS ALMOST COMPLETELY DEBILITATED. HAD MIGRAINES FOR 8 DAYS STRAIGHT! WENT TO HOSPITAL. NEURO SAID MS OR BRAIN STEM TUMOR. WROTE BRAIN STEM TUMOR ON ADMITTANCE SLIP. I WAS FRANTIC!!!!!!! GOT ADMITTED TO HOSPITAL, ON 3RD DAY AT 8AM STARTED BLOODWORK, 11 AM MRI AND 3PM LP AND AT 7.30PM DXED MS. AT 10PM STARED 4GS OF STERIODS. BETTER BUT NOT GOOD. IN 6 WKS OF BEING DXED I ALSO DEVELOPED OPTIC NEURITIS AND CLUSTER-MIGRAINES AND POSSIBLY TRIGEMINAL NEURALGIA. NEVER HAD A REAL SYMPTOM TILL 5 YRS LATER AT 25! IT SEEMS LIKE EVERY 2 WKS I DEVELOP SOMETHING!!!!!!!!!! NEW INFO!

SO I ASK... " WHAT NEXT?????????!!!!!!!!!!!!!!

BUT GOD IS GOOD!!!!!

I MAY HAVE MS, BUT MS SURE DOESN'T HAVE ME!!!!!!!!

BLESSINGS!

MRS. KCH-S AKA MRS. KEREN. S
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KCHS1

Last edited by kchs1; 08-04-2005 at 08:11 AM.

 
Old 08-04-2005, 08:38 AM   #5
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gyrl293 HB User
Re: Anyone please?????????

Well if nothing eles reading the posting here keeps the spirt up....knowing your not alone is half the battle .....besides....I know the feeling of MS actuly being the better dx if you can belive that ....
Each day they the cheif and the residents would come in to my room and throw out about 5 new dx at me and then start the test 2 of which were "well you eithe are throwing off emboli from a hole in your heart which got lodged in your spinal cord or you could have a spinal cord tumor" THANK GOD neither of which I have. You would think that before you say things like that to poeple, you would wanna have some major evidence backing it up before you just throw it at them .....anyway
here I am heavy legs and all taking things one day at a time ....I am gateful for a lot !!!!! thanks everyone god bless you all I'll keep you in my prayers too =)

 
Old 08-04-2005, 08:53 AM   #6
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Rachael88 HB User
Re: Anyone please?????????

Hi, I'm new to this site and not experiencing the exact problems you are, but right noe I'm beeing labled possible MS. In the middle of lots of testing, andI am also terribly csared. Horribly scared, but I have seen so many positive messages sent from those who have MS, that it can get better, and that's what we have to hang on to. I can't walk without falling today and had a good cry spell before I decided to ckeck back in on this site. It helps to keep my head clear. I've been told that if it is MS, there is no better time to come down ith is than this day and age from my GP, because they have treatment that are so much better than before. I will take this as good news. Someone just wrote me that though they have problems with thier eyesight, it can get better too, which is one thig I didn't know and fills me with hope, so just keep writing. your friend, Rachael.

 
Old 08-04-2005, 09:05 AM   #7
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marion06095 HB User
Re: Anyone please?????????

gyrl293, you sure are right. Reading here does help keep spirits up. I am still a "probable MS" person, and sometimes I would like to post, but I don't really know enough about MS to be of much help to anyone. I hope when I see the MS doctor on the 16th I'll get all sorts of questions answered. My hope is that the doctor uses email to communicate with patients. A few years ago I had a doctor that would answer her email every evening. It was wonderful, and I always knew that an answer was only a day away.

Keep hanging out here. Reading this board not only educates me about MS, but it also takes my mind off of my problems, and reminds me that there are those who are much worse off than I am.

 
Old 08-04-2005, 09:12 AM   #8
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KelliD HB User
Re: Anyone please?????????

My internist tearfully told me I had a fatal brain disease. She was trying not to cry. I just grinned and said "no I don't." Her words hit me later...and thank the Lord! It WAS "just" MS. I know what you mean about MS being the lesser evil....

 
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