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apeman
 Post subject: Aggressive MS
PostPosted: Wed May 16, 2012 9:59 am 
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Hi

My sister who is 46 went to the hospital with stroke like symptoms after some testing she was diagnosed with MS.
After a short hospital stay a few months of rehab she was getting back to almost normal. Learning she had MS sucked but we were learning to live with it and every thing I read was it was going to be a long tough battle.

Then she got a cold and that slow things down and then two weeks later she had another relapse.

This was worse then the first one. Over 3 weeks she has gone from having a hard time speaking and getting around too she cant talk she cant walk. Most of the time I don’t even know if she knows I'm there. Its only been 5 months since she was diagnosed and it seem like we are already so near the end. She has multiple lesions on the brain and at least one on her spine.

I have been reading to her when I visit but I can’t tell if she even understand. If I’m lucky I get a 1 sec smile of recognition then its gone. I’m afraid she won’t come back from this serve state.

I don’t know what to do
Brad
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DougL
 Post subject: Re: Aggressive MS
PostPosted: Wed May 16, 2012 10:38 am 
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apeman wrote:
I have been reading to her when I visit...

I don’t know what to do
welcome Brad.

i say keep visiting and keep reading to her.
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LR1234
 Post subject: Re: Aggressive MS
PostPosted: Wed May 16, 2012 12:34 pm 
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Location: California
Is she taking any blood thinners?? I had a similar relapse but not as severe. It was a cognitive one and effected both frontal lesions of my brain. I literally had to be looked after as I couldn't do anything for myself. This acute stage lasted 3 months and then it has been a long road back since.
I am on blood thinners which I think are helping....Have they def ruled out all other conditions? Like blood clots, lyme disease, Thyroiditis encephlitis (look into this one as I think my relapse was more this than MS) I have never heard of MS alone being so aggressive like that.
I am so sorry your sister is going through this, my thoughts and prayers are with you.
My gut feeling is this is not MS but something else that looks like MS.

http://en.wikipedia.org/wiki/Hashimoto's_encephalopathy

I have no real advice to offer other than my sympathies x


Last edited by LR1234 on Thu May 17, 2012 5:48 am, edited 1 time in total.

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CVfactor
 Post subject: Re: Aggressive MS
PostPosted: Wed May 16, 2012 2:11 pm 
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Usually MS is not a disease with a rapid onset, so I would be interested to know on what basis she was diagnosed. There is a related disease to MS called acute disseminated encephalomyelitis or ADEM. This disease will show rapid onset of lesions (spine and/or brain) as well as disability. The main treatment is high dose intravenous corticosteroids or possibly IVIg.

I have this disease and had extreme dissability such as paralysis and seizures, but recovered some function after proper treatment. However about 30% of people with ADEM eventually convert to MS. You may want to ask your doctor about this condition or possibly get a second opinion. Good luck to you.
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apeman
 Post subject: Re: Aggressive MS
PostPosted: Thu May 17, 2012 7:39 am 
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She just had another MRI yesterday the inflammation on the lesions has gone down so that is a good sign the first in a while.
I think the speed of this has been so fast even the doctors are unsure what to do other then treat her like they would anyone else. She has an appointment with a MS specialist in a week so hopefuly we will learn some more then.

And thank you for your feedback.

I do have a question, when she is in this state where she can't talk and seems to just stare off, does she still understand whats going on and just can't communicate back? or she somewhere else?

Thanks
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LR1234
 Post subject: Re: Aggressive MS
PostPosted: Thu May 17, 2012 9:14 am 
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Location: California
She can hear u and feel you are there if you hold her hand etc but she may find it hard to understand what you are saying as speech can be fast to process. I am reading a book bout a neuroscientist who was in a similar state to your sister and she describes what it felt like in that state.

Do you know where these lesions are? Mine were frontal lobe
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CVfactor
 Post subject: Re: Aggressive MS
PostPosted: Thu May 17, 2012 1:34 pm 
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Good info here:
http://en.m.wikipedia.org/wiki/Multiple_sclerosis_borderline
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seeva
 Post subject: Re: Aggressive MS
PostPosted: Thu May 17, 2012 10:36 pm 
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Joined: Sun Jan 20, 2008 4:00 pm
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Location: SYDNEY
apeman wrote:
Hi

My sister who is 46 went to the hospital with stroke like symptoms after some testing she was diagnosed with MS.
After a short hospital stay a few months of rehab she was getting back to almost normal. Learning she had MS sucked but we were learning to live with it and every thing I read was it was going to be a long tough battle.

Then she got a cold and that slow things down and then two weeks later she had another relapse.

This was worse then the first one. Over 3 weeks she has gone from having a hard time speaking and getting around too she cant talk she cant walk. Most of the time I don’t even know if she knows I'm there. Its only been 5 months since she was diagnosed and it seem like we are already so near the end. She has multiple lesions on the brain and at least one on her spine.

I have been reading to her when I visit but I can’t tell if she even understand. If I’m lucky I get a 1 sec smile of recognition then its gone. I’m afraid she won’t come back from this serve state.

hi my name is seeva i had the same aggressive m.s in the first place my neuro gave me 3 days of mitroxntrone by IV, it works for me every time i had bad attack he gave me same does and it works for me ask your sister to try mitroxantron surly it works for her. good luck for her regards seeva
I don’t know what to do
Brad

hi my name is seeva i had the same aggressive m.s in the first place my neuro gave me 3 days of mitroxntrone by IV, it works for me every time i had bad attack he gave me same does and it works for me ask your sister to try mitroxantron surly it works for her. good luck for her regards seeva
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KateCW
 Post subject: Re: Aggressive MS
PostPosted: Tue May 22, 2012 6:20 am 
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I thinking read somewhere that plasmapheresis (hope I've got that right) is sometimes used for relapses not responding to steroids e TC.

MAy I ask what city your sister is in? Canada, US-east or west? Our Canadian doctors are less likely to try unconventional therapies in my opinion.

_________________
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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apeman
 Post subject: Re: Aggressive MS
PostPosted: Tue May 22, 2012 8:48 am 
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LR1234 - What is the name of the book that you are reading?

KateCW - We live in the Kitchener/Waterloo area.

I do have some good news she is starting to communicate again. Just short words and only a few still but its something. Two weeks ago I was sad that was all she could do, now I'm so glad she can even do that.

She has a meeting with a MS specialist in London tomorrow hoping we will have a better idea of a plan of action after that.

I'm hoping she will get moved out of the hosiptial and to somewhere that can better care for level of need. The hostipal staff is great but they just dont have the time for the amount of care she needs and its taking it toll on my family. My parents are retired and are up there every day for 4-6 hours and they can't keep this up forever. We all take turns so that other then at night someone is amlost always with her even if she is sleeping. As hard as it is on us it 100 times worse for her.
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LR1234
 Post subject: Re: Aggressive MS
PostPosted: Tue May 22, 2012 11:03 am 
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Joined: Wed Feb 11, 2009 4:00 pm
Posts: 1420
Location: California
My stroke of insight jill taylor


She is very lucky to have a family like yours. I am glad she is starting to show some signs of improvement and I hope she gets back to being normal. x


Last edited by LR1234 on Tue May 22, 2012 12:54 pm, edited 1 time in total.

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KateCW
 Post subject: Re: Aggressive MS
PostPosted: Tue May 22, 2012 12:46 pm 
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Posts: 123
If you are happy with the plan the MS specialist comes up with that's great, but i have been traveling to the International Multiple Sclerosis Management Practice in New York City every 2 months. There are no disease modifying drugs for my type of MS and. I wanted to try an experimental treatmnt they offer. You are a lot closer than we are and you can go there for a consult if your sister isn't improving. Or if you feel you want more options.

Google the clinic to learn more and feel free to PM me if you want to know about the doctor I see or where to start, etc. good luck.

_________________
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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