For those who are PPMS/SPMS (poll)

Filmmaker · Post by **Filmmaker** » Tue Apr 05, 2011 3:16 am

I've just posted this but I am starting a new topic for it.
have read in a study about MS that the worst damage was done in the first five years but that afterwards, the impact starts to lessen... I guess this applies to PPMS and SPMS :
http://www.disabled-world.com/health/au ... lapses.php
Is that true? if you've had SPMS for five years and more, did you feel that?

sandrab · Post by **sandrab** » Tue Apr 05, 2011 5:56 am

I've been told by 3 different neuros that I have PPMS. When I was first diagnosed in 2001 I was told I had rrms. Over the years I developed "black holes". Now I have PPMS. I haven't had many exerbations over the years just my walking has gotten much worse, I use a walker most of the time now. Fear of falling is my biggest fear. Last time I broke my wrist. I've been told there is no treatment for PPMS, Is that true? What do I do now?

Filmmaker · Post by **Filmmaker** » Tue Apr 05, 2011 7:44 am

Hi Sandrab
Since when have you beenPPMS? I am trying to confirm wherter this study is right or not, menaing did you notice that the worst damage was do you during the first five years of PPMS?
I know all the neuros say ethere is no treatment but «i really think diet, exercice and very low stress are helpfulk!

sandrab · Post by **sandrab** » Tue Apr 05, 2011 8:57 am

I was officially told by my original Neuro in September 2010. He was real hesitant to tell me for some reason. After I broke my wrist, I saw him after the surgery to fix my wrist and he pissed me off and I decided not to see him anymore. Then, looking for a new neuro I went to another doctor who told me that my brains would turn to mush and there was nothing he could do for me. He gave me prescriptions for a scooter and a wheelchair. Needless to say I only saw him that one time.
Now I see Dr Thomas Snyder and he verified the diagnosis of PPMS but he said I have possibley PPMS/Relapsing since I have improved since I got out of the rehab hospital and now can walk, not good, but I can walk. I have another appointment with Dr. Snyder tomorrow and I'll let you know what he says now.

sandrab · Post by **sandrab** » Thu Apr 07, 2011 4:57 am

I saw Dr. Snyder yesterday. What a good doctor. I've seen some really unkind, uncaring doctors in the past, he seems like he cares and knows what he is doing. We are going to try tsybri after I get all the approvals with insurance. I'm excited about a possible improvement in my walking and cognition. We'll have to see about that, time will tell. I try not to get too excited about anything since there has been so many disappointments in the past. So maybe I'm not a good candidate for your PPMS survey after all.

Filmmaker · Post by **Filmmaker** » Thu Apr 07, 2011 5:26 am

thank you sadnrab for your update. Actually I consider SPMS or PPMS anyone of us who has not had a complete remission in six months. That does not mean there is no room for improvement of course... I am SPMS and my cognitive issues improved the last few months... I am just asking if you ffeel that the study I posted about is right: the study says that the worst damage done physically to us in MS is done during the five first years of active disease and then it becomes kind of less and less aggressive...

sandrab · Post by **sandrab** » Thu Apr 07, 2011 9:16 am

I have to disagree with the study. I have gotten slowly worse. I have not had exerbations to speak of. My walking has gotten slowly worse, my balance, my cognitive issues just about everything has slowly gotten worse. Even my ability to comprehend almost everything. I think I will stop talking now while I'm ahead.
Sandra

munchkin · Post by **munchkin** » Thu Apr 07, 2011 2:12 pm

Hi

I agree with Sandra, the last 5 years have been a slow and steady decline in ability. Walking is more difficult, writing, cutting food, reading, etc.

My first realization of MS can be traced back to 1993 and I would have considered myself to have had benign MS at that point, or if I had been diagnosed and put on DMD that the drugs had been effective.

I have gone from being able to walk for 5 or so miles to barely being able to walk 1/2 mile with a cane.

Filmmaker · Post by **Filmmaker** » Thu Apr 07, 2011 4:07 pm

Thanks munchkin for your comment. If I may ask, since when have you been SPMS?

munchkin · Post by **munchkin** » Fri Apr 08, 2011 4:42 am

The diagnosis of SPMS was made in 2007, I was originally diagnosed as either PRMS or RRMS in 2005.

I have heard of studies done where they think the actual damage to the axions (this is from memory so I might be a little off) happens early in the disease process but doesn't reflect in disability until later in life.

Filmmaker · Post by **Filmmaker** » Fri Apr 08, 2011 1:41 pm

Oh interesting remark... What seems interestinmg about this study I posted about is that the same conclusions have been drwan about other neruological disease such as Behcet disease where they think neuro Behcet does the worst damage in the first five years...

brave · Post by **brave** » Sun Apr 10, 2011 12:39 am

I was diagnosed with Progressive MS , 14 years a go .
since then , I got worse and worse slowly until 4 years back
all sudden 4 years a go my MS became very aggressive , lost my mobility in matter of 2 years and developed many more symptoms over last 4 years

brave

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