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Old 10-12-2009, 01:05 AM   #1
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jellore HB User
Primary Progressive timeline

I know MS effects everyone in different ways, however with someone dx with PPMS what is the usual course of events? 3 years in and I have no problem walking, although there is not a day with symptoms. Fatigue a real issue when walking a reasonable distance of say 2 or 3 kms. Muscle pains, cramps in all parts of the body, especially chest, shoulders, almost permanent tingling in all parts of body, bad tinnitus, muscle twitching in all parts, clumsy hands, have to concentrate when talking.

They say that PPMS you will be unable to walk within 5 to 7 years. Correct?

 
Old 10-12-2009, 04:13 AM   #2
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Re: Primary Progressive timeline

Jellore-
Sice less then 10% of MS cases are primary progressive, I dont think anyone would be able to tell you the actual time line. What caused you to be dx with PP instead of R/R?? 85% of patients are diagnosed with relapse/remitting type of MS.

As you said, each person is individual. I know someone with PP MS who has been wheelchair bound since their diagnosis, but how long did they have MS before seeing the doctor? No one knows...I also know someone with PP MS who is very active, still driving/walking and working- who has had MS for ten years...


There is nothing written in stone. If you are as concerned as you sound, this is a converstation for your doctor. THere are drugs now, which are being used - even if they arent FDA appproved for PP MS. The drugs which used to be RR only- are being used to treat patients with PP in some areas. YOu really should talk to your doctor to make sure you are doing everything possible to fight progression. Please take care of yourself and remember that stress can only aggravate your symtoms.

Nikki
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Old 10-12-2009, 07:12 AM   #3
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Re: Primary Progressive timeline

The progressive time line will vary from one person to another. If you are dillegent about avoiding triggers and maintaining a program of exercise, stretching, and sound nutrition, you may be able to off-set the curve. I am still walking, though with a cane. I had a good 20 year run, but it has caught up with me. I will not relinquish my independence, though, because I have too much yet to do.

Your doctor might be able to get you some case study results, but you will find that there is no case that is representative for all. Additionlly, symptoms can vary. My neurologist told me that she looks at a 3 year picture. That is, she told me that the symptoms I experienced over the course of three years will be the symptoms I will most likely have to deal with from now until the end. Progressive means that you will deal daily with problems without any rest periods. It is like playing a full game of football (or Aussie rules football) without any rest periods.

Stay positive!
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