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Postby Ragdolly » Sat May 02, 2009 1:10 pm

Hi I've just joined from facebook. I have a brother who is severly affected by primary progressive m.s. My question is, is there any form of treatment for people with the lable of primary progressive ms ? Your help would be very much appreciated many thanks :D
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Postby patientx » Sat May 02, 2009 1:22 pm

PPMS is a tough one. As you've probably already found, most of the current treatments are only approved for relapsing remitting MS. There was a trial that tried Copaxone for PPMS, but the results weren't overwhelming. Still, I think some doctors will still try it. There is an ongoing study trying Fingolimod with PPMS. (Fingolimod is a new pill that i close to wrapping up its trials for RRMS).

Where are you located?
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Postby Ragdolly » Sat May 02, 2009 1:38 pm

Hi thank you and I'm in Grimsby N.E.LINCS
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Postby Loobie » Sat May 02, 2009 2:57 pm

One topic you may want to pay some attention to is the last topic in the treatments section titled CCVSI. It's absolutely unproven and is just getting legs. However, in the research that has been performed to date, it is the only thing that has come across anything that ALL MS'ers, to date in the studies anyway, have. There is not another common thread between all the variants of MS as far as I know. Just a thought since as you already know, the approved route is pretty limited for PPMS. I wish you well and I'm sorry to hear that your brother is severely affected. Welcome to the board!
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Thank you

Postby Ragdolly » Sat May 02, 2009 3:55 pm

I would just like to say a huge thank you for your replies. I feel and my brother feels he has just been left to rot by the health professionals. But on a plus side I have a big mouth and fight for him and his family hehe. Unfortunately my brother can no longer do anything for himself physically but his mind is still very witty and he has his wicked sense of humour. He has not long had a peg fitted and is getting little fatty :D So if anyone needs an insight to the peg feed I'll be glad to offer. :lol: well I can say how it has benefitted my brother anyway. Many thanks once again xx
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Postby Loobie » Sun May 03, 2009 5:20 am

Peg Feed??
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peg feed

Postby Ragdolly » Sun May 03, 2009 6:24 am

Sorry :oops: peg means percutaneous endoscopic gastrostomy it's a tube that goes straight into the stomach when a person is no longer able to swallow or the food goes straight into the lungs which is what was happening in my brothers case. After insertion, one end of the feeding tube will rest internally against your stomach wall. The other end will be on the outside of your abdomen, coming through your skin. To keep the feeding tube in place, a short cross-piece of tube (or flange) sits snuggly at the level of your skin where the tube comes out to your abdomen It's very easy to care for and use. It sounds alot worse than it is honest :D It enables a person to get the nutrients they need over a period of 24 hours. You can set the machine to a rate that suits your body i.e. 35mls per hour etc. Depending on what the dietician sets you up for, for your daily intake. I hope this is clearer xx :lol:
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Postby patientx » Sun May 03, 2009 8:53 am

Ragdolly wrote:Hi thank you and I'm in Grimsby N.E.LINCS


Forgive my ignorance - but what is LINCS?

It does sound like your brother is pretty badly affected. I admire his being able to keep a sense of humor.
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Postby Ragdolly » Sun May 03, 2009 11:54 am

Hi Lincs is for Licolnshire so it's North East Lincolnshire England :D
Thank you for admiring my brother he has a great sense of humor and had the nurses looking for his tattoo of the titanic down his gown and when they said they couldn't see it he said oh hell it's sunk :lol: I made a poem up for him if you would like to read it? xx
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Postby Loobie » Sun May 03, 2009 3:09 pm

I would love to read it. He sounds like a hell of a guy.
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Postby Ragdolly » Sun May 03, 2009 3:48 pm

I made this poem up after a Dr asked my brother a barage of questions and didn't wait for any answers before walking off.

My name is Paul,
I'm not blind deaf or dumb,
So when you ask those questions,
Please wait for my answers to come.
Don't look at me silly,
Because really I know,
What you have just said to me,
Don't rush and go.
My brain is working,
But different to yours,
Due to the messages,
Getting disorted on course.
When you go home all snuggled at night
Take on a thought
Did you treat me alright?
Is your answer good or bad?
Did you wait for the answers I had?

When I put this above my brothers bed a few of the nurses requested a copy :) and a few more had tears in their eyes :(
Hope you like it xxx
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Postby Karazhan » Sun May 03, 2009 8:10 pm

Ragdolly,

Nice poem! I'm glad you found this forum, it's full of good information and the people are great too. Your brother sounds interesting, especially the "wicked sense of humor", I like that. :)
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Postby patientx » Mon May 04, 2009 6:43 am

I like that poem. I might just have to slip it to my neurologist at my next visit.
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Postby Ragdolly » Mon May 04, 2009 7:58 am

Patientx Go for it, it makes people think about their actions. One thing though it should say distorted on course not disorted hope you get on well at your next visit xx
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Postby Loobie » Mon May 04, 2009 3:43 pm

I like it!
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