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Old 08-03-2005, 10:38 AM   #1
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Dr's stopped counting at 100 MS lesions

My dear friend has been diagnosed with "the most severe case of MS" her physician had seen. In February, she had a feeling of something just not feeling right... and in May, she went to bed "normal" and awoke the next morning unable to move, talk, control bodily functions etc. After blood work, spinal taps, CT, X-Rays, and Finally an MRI, they made the diagnosis of MS. The MRI image displayed so many lesions no one could believe what they were seeing.
Her Neurologist has started her on an 80mg dose of Pregnizone... to "shock her system" and they will slowly reduce that, and begin MS treatment.

Now, 2 months post-diagnosis, she is back home, can walk ONLY with the assistance of a walker and for short distances. Her right side is VERY weak... she cannot lift here Right leg more than 2", and does not have enough strength to lift her 1yr old son. She cannot cut a piece of meat, has great difficulty holding a glass/cup. She's unable to bathe herself, and cannot do any types of "housework" dishes/vaccuum/etc. (The good side of the diagnosis, haha) Her spirits seem to be good so far, she's no longer in denial.. but has yet to get upset about it either.. she's angry... she's mad that no one can tell her WHY she got this disease or what may happen in her future. I guess thats one of the most frustrating parts of this disease.

At this point, we're trying to figure out what may be the course of treatment, or if she will even have any sort of "normal" life again. My friend is only 39 years old, and has 4 children. There is no MS in her family history.

Has anyone seen or heard of a case of MS with this many lesions? What can we expect? I know there is a lot of research with different drugs, and even stem cell research.. but we're just trying to figure out what MAY happen from here. Her neurologist is contacting the head of Neurology, specializing in MS in Hamilton, ON (We are in ON, Canada), to get his opinions on course of treatment.

If anyone could give advice or information, it would be greatly appreciated.
Thank You

 
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Old 08-03-2005, 11:14 AM   #2
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djpihavems HB User
Re: Dr's stopped counting at 100 MS lesions

I'm so surprised they did oral steroids, and not IV steroids. Treating an exacerbation with oral prednisone went out of favor a few years ago.

 
Old 08-03-2005, 04:26 PM   #3
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Natatude HB User
Re: Dr's stopped counting at 100 MS lesions

i would definately tell her to ask her nuero for IV steroids! that helped me out of a bad relapse last summer,,, many hugs and prayers to ur friend.

 
Old 08-03-2005, 05:04 PM   #4
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Re: Dr's stopped counting at 100 MS lesions

Ditto on the iv steroids. I would definitely get to a specialist...and as fast as possible. In a case that sudden and extreme, 80mg. oral would be like baby asprin! Best of luck to your friend. By the way, does it stay pretty cool up there in the summers? It's HOT here in Tx., but I've been here all my life

 
Old 08-03-2005, 09:40 PM   #5
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jamesdean HB User
Re: Dr's stopped counting at 100 MS lesions

This is my first reply to anyone. A possitive attituide, moderate exercise and stay out of heat was the advice we where given.

 
Old 08-04-2005, 07:09 AM   #6
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Re: Dr's stopped counting at 100 MS lesions

I LIVED IN HAMILTON FOR A YEAR, I LOVED IT THERE. COMING FROM BRAMPTON IT SEEMED SMALL BUT I LOVED IT NONE THE LESS.

GOING TO AN MS SPECIALIST IS BEST IN MY OPINION. I DONT HAVE THAT MANY LESION AND I WAS ON IV STERIODS OF 4gs A DAY. WAS SENT HOME WITH PREDNISONE. THE IV STERIODS WILL HELP HER, CAUSE RIGHT NOW I CAN BATHE MYSELF, WALK AND EVEN COOK CERTAIN THINGS AGAIN. THERE ARE STILL HARD DAYS BUT IT'S BETTER.

BEST OF LUCK AND GOD'S RICHEST BLESSINGS!!

MRS. KCH-S

P.S: BEACHLOVER CANADA DOESN'T GET AS HOT AS THE U.S, BUT IT GETS HOT. AND HAMILTON IS GREAT, IT'S CLOSE TO LAKE ERIE AND JUST WONDERFULLY COOL AT TIMES.
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KCHS1

Last edited by kchs1; 08-04-2005 at 07:12 AM.

 
Old 08-04-2005, 10:08 AM   #7
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peony8479 HB User
Re: Dr's stopped counting at 100 MS lesions

Hello,

I have MS. I'm a Canadian living in the U.S. You need to connect your friend with Dr Mark Freedman. He's "IT" in Canada - he practices at the General Hospital in Ottawa. CTV's show W5 had a special on him and his treatment with stem cells. I also know someone in Ottawa with MS who sees him and says he's excellent. My Neuro here in the US is well known and he is a colleague of Freedman's. Did you also know that the Quebec-Windsor corridor in Canada is known as a cluster of MS. The incidence is significantly high. I am sending positive thoughts for you and your friend. I was dx'd in Feb of this year at 38 years with 20 lesions. Doing well - I have no clinical symptoms at all right now. Good luck and best wishes....

 
Old 08-04-2005, 10:11 PM   #8
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Re: Dr's stopped counting at 100 MS lesions

Wow... thanks so much for all the positive feedback.. It is very much appreciated.

I will print this off and give it to Mary and her family. She see's the specialist in Hamilton this week, so I'll suggest the IV steroid.. and see what they have to say..

Beachlover... It does get incredibly hot here as well, we have high humidity so even a 30* C feels like 45* C.. Today was brutal... Just cooked!

Thank You so much for the information as Mary is quite uncertain about her future, and feels things will never get better.

 
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