Hello and questions...

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Hello and questions...

Postby Baumer » Thu Jan 13, 2005 4:06 pm

Hello all,

I've been reading this site since I was diagnosed with MS in October 2004. I thought I would finally intoduce myself and try to find out some practical answers to my questions.

My symptoms were/are numbness/tingling from the abdomen down through both legs. My right knee was also fairly weak and unstable. I had painful cramping feelings in my feet as if my toes were tied in knots. Initially, the docs thought I had a slipped disc or something, but Xrays and MRI's revealed nothing in the lumbar area. More MRI's were done that revealed two lesions on my spinal cord (one active) and a small lesion on my brain. Spinal taps and blood tests also showed positive for the MS markers.

Months previous to this, I had a bout with very hypersensitive and painful skin sensations on my chest and back. Even a shirt ar blanket would cause severe pain when it fisrt touched my skin. I'm assuming that this was my first attack.

When diagnosed, my neuro tried to stop/reduce the attack that was occuring by putting me on a Prednisone taper. While on the Prednisone, the numbness went completely away. After about a week off the Prednisone, the tingling started back in my right foot and continued to get worse until my abdomen and legs were numb again. My neuro then put me on another round of Prednisone, thinking we were close to knocking the current attack down but not out. The second Prednisone taper worked as well as the first, getting rid of almost all the symptoms completely (except for some weakness still in the knee and some abdominal numbness). Again, this lasted for about a week before the symptoms began to return. This time, he decided to pull out "the big guns" and put me on Solu-medrol (a three day taper (1000/750/500) followed by the Prednisone taper). Again, most symptoms disappeared after the Solu-medrol IV and the first 6 days of the Prednisone taper. This time, however, the tingling is returning to the right foot while I am still on the Prednisone (5 days left on the taper).

Is this normal for people taking the steroids? Do they not necessarily halt the attack but simply mask it for a while? Being new to this whole thing, I don't exactly know what to expect. I've been under a lot of stress the last 3 months that I think may be adding to the issues (dx, 2 grandparents passing away, pet passing away, building a new house, other health problems, and of course "the holidays").

BTW, I'm supposed to be starting Tysabri as soon as insurance/neuro/drug company get things figured out.

Thanks in advance,
Aaron
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Postby MOMTO3 » Thu Jan 13, 2005 6:50 pm

HELLO AARON, AND WELCOME! YOU WILL FIND THIS SITE VERY HELPFUL, AND THE PEOPLE ARE GREAT!

I DO NOT KNOW THE MEDICALLY CORRECT ANSWER BUT I CAN TELL YOU OF MY EXPERIENCE, I TOO HAVE THE SEVERE NUMBNESS I HAD IT IN MY HAND IN THE SUMMER, AFTER MONTHS WITH A NEURO THAT KNEW DIDDLY, I WENT TO A MS SPECIALIST AND SHE IMMEDIATELY PUT ME IN THE HOSPITAL, FOR A 5 DAY TREATMENT OF SOLU-MEDROL,SHE TOLD ME SOMETIMES IT TAKES AWHILE TO HELP, IT TOOK ME 4 WEEKS TO FEEL THE RELIEF FROM IT, BUT WHEN IT KICKED IN IT COMPLETLY WENT AWAY. I ALSO WAS UNDER SEVERE STRESS AT THAT TIME, I HAD JUST HAD A MISCARRIAGE, NOW I AM EXPERIENCING NUMBNESS IN MY LEFT SIDE IT STARTED IN MY KNEE, DOC GAVE ME ORAL STERIODS TO AVOID HOSP AGAIN, PREDNISONE, 100 MG A DAY FOR 4 DAYS WELL IT HASN'T DONE A DARN THING AS OF YET, AND I STOPPED IT A WEEK AGO. AGAIN UNDER STRESS, AS I JUST RECENTLY LOST MY HOUSE, SO AS FAR AS MY EXPERIENCE I FEEL STRESS HAS ALOT TO DO WITH MY FLARES. LIKE I SAID I CAN'T SPEAK ON OFFICIAL MEDICAL TERMS, JUST WHAT I'VE NOTICED. ARE YOU ON ANY MEDS AT ALL NOW? I AM CURRENTLY TAKING NEURONTIN TO HELP IT RELIEVES SOME OF THE BURNING PAIN I FEEL BUT DOESNT SEEM TO AFFECT THE NUMBNESS, AND I HAVE TO TAKE IT EXACTLY EVERY 6 HRS, OR THE BURNING STARTS AGAIN, I AM ASSUMING YOU ALSO HAVE THE BURNING? AS YOU SAID HURT FOR ANYTHING TO TOUCH YOUR SKIN? AGAIN WELCOME AND I SINCERELY HOPE YOU FIND SOME RELIEF SOON :)
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Postby Arron » Thu Jan 13, 2005 9:50 pm

Hi Aaron (nice name!), welcome to the site! It's great to have you register and I hope you'll find the answer to your questions, as well as pitch in to answer the questions of others :)

welcome again!
-arron
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Thanks

Postby Baumer » Thu Jan 13, 2005 10:09 pm

Hello MOMTO3,

Thanks for your quick response. I'm sorry to hear about the stressful events that you have undergone. As if MS by itself isn't enough, it has to kick us while we're down (and it kicks pretty hard!). :(

I am not currently taking any other meds except for the Prednisone and an occasional Xanax for the anxiety cause by the steriods.

The painful burning on my chest and back was what I believe was my first MS attack back in May of 2004. I was on my honeymoon in the Bahamas when the pain started. Just a small sensitive area on my back that after about a week spread to my whole right side chest/back. Over about five or six weeks, the sensitivity and pain went away on its own. About a month after that, the numbness began in my legs, which I have been battling for the past 7 months.

Here's more info about me that I should have included in my first post (but it seemed it was getting loooonnnngggggg):

I'm 35 years old and live in Idaho. I work at Micron Technology as an electrical engineer. I've lived in Idaho my whole life. I was officially diagnosed on October 14, 2004, although it was strongly suspected for about a month before that. My mother was diagnosed with MS 5 years ago, although she hasn't had a relapse since. She is not on any therapy.

Thanks again for you response. I look forward to talking with you again.

Aaron
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Postby MOMTO3 » Fri Jan 14, 2005 5:00 am

JUST A THOUGHT, BUT YOU SAY YOU WERE IN THE BAHAMAS WHEN YOU EXPERIENCED YOUR FLARE, IT IS POSSIBLE THE HEAT DID IT TO YOU. IF IM IN HEAT FORGET IT, I ALWAYS HAVE SOMETHING NEW THAT POPS ITS HEAD OUT :evil: , I HAVE TO TAKE LUKE WARM SHOWERS, AND MAKE SURE I STAY IN THE A/C IN THE SUMMER.

I WILL GIVE YOU A LITTLE BAKGROUND ON ME :D I AM 29 YRS OLD, I LIVE IN N.Y. WAS DX'ED 6 YEARS AGO. I AM A STAY AT HOME MOMMY TO 3 BEAUTIFUL GIRLS, AGES 11,9 AND 5. AS FAR AS WE ARE AWARE NOONE IN MY FAMILY HAS, BUT MY MOTHER IS PLAQUED WITH ANOTHER HORRIBLE DISEASE CALLED RSD(REFLEX SYMPATHETIC DYSTROPHY).
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