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Old 11-21-2009, 07:21 PM   #11
SallyC
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Well, I think PPMS is a bit more incidious than SPMS, which is an advancement of RRMS. We do have certain things in common, one being, that there is no effective DMD for either...and another being, that we don't have remittances and remissions.

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Old 11-22-2009, 07:22 AM   #12
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I never remit, hope that being older (46 at DX) means I'll be gone or close to it if it gets really bad (!), Have never (never say never with MS, who knows what may happen), had blindness, no numbness, only when trying to use it pain/discomfort in left knee, no tingling, other than STM loss, no real cognitive losses other than "Too "much of anything can feel overwhelming.
I do have PPMS, am in a chair (Wheelchair Kamikaze (Marc) has influenced me, tend to "zoom" whenever I can. DH gets no end nervous.) But what I'm saying is yes, it sucks, but it could be worse. Anyone with PP try LDN? VCCSI and stem cell interest me. Fingolimod does too (but is it I like the name?)
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Old 11-22-2009, 10:29 AM   #13
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I do not know when my first lesion(s) began to appear. I basically ignored them thinking that it was just due to being flat footed as a child. I had to wear really ugly shoes but in my 20's, I wore high heels and short skirts!

It started in my early 40's but again, I ignored it and was not diagnosed until it progressed from just numb and cold in my feet to numbness creeping up to my abdomen.

Dispensing with all the MRI details, I will never forget the day when I was called into the PCP office and told I had MS. I did not even know what that meant. There was not even a neurologist to be able to see (note: I have GOOD insurance, or that is what I thought) for 3 months. PCP told me not to go to the internet, lots of false information.

Like I was going to not head straight to my computer!!! First thing I read said "no cure and hopeless." No wonder the PCP told me not to look.

I sent an e-mail to one of my brothers, a neurologist in San Francisco, to tell him my dx. He called immediately telling me to go to the ER. A neurologist is required to be in the hospital.

I did not want to go, the PCP had let me go home and going to the ER would be extreme. DB insisted on calling PCP and called me to say go to ER. I did.

After lots of tests and steroids, MS dx confirmed. Dx'ed as RR for first year to see if there is a remission of sx. There was no remission of sx ever, even before dx.

So, a year later with the location of lesions plus no remissions and age of sx's, PPMS dx.

I go to Mayo right now, as long as insurance will pay for the doctors there. Everyone is very agreeable and I have tried a bunch of medicines. I get whatever I want but there are no trials going on right now with Mayo.

This is the short version of my PPMS!! No remissions, just increasing paralysis but slow. Pain factor is about the same.

Mentally a bit slower but not much to be a concern. Not everything is about MS.
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Old 11-22-2009, 03:08 PM   #14
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Aarcyn is as mentally alert as I'd like, she usually beats me in Trivia.

Of course I read every thing I could on Internet. Much of it really scared me as I waited for things (haven't had yet) to happen. Devastating I was told, really played with my head. One day at a time was advice I liked.
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Old 11-22-2009, 04:51 PM   #15
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This type of MS is characterised by a gradual progression of the disease from its onset with no remissions at all. There may be periods of a leveling off of disease activity and, as with secondary progressive, there may be good and bad days or weeks. PPMS differs from Relapsing/Remitting and Secondary Progressive in that onset is typically in the late thirties or early forties, men are as likely women to develop it and initial disease activity is in the spinal cord and not in the brain. Primary Progressive MS often migrates into the brain, but is less likely to damage brain areas than relapsing/remitting or secondary progressive - for example, people with Primary Progressive are less likely to develop cognitive problems.
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Sadly, this is the most positive thing I've read. PP is not labeled the wrse that can happen. I was 46 at diagnosis, I'd had a couple of adventures.

Re: CCSVI sounds great but not PP-friendly Any thoughts? (no, Bufflo too far away for me, anyone going to trial testing there?) They are just looking at veins, no shunts/shents
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Old 11-22-2009, 04:57 PM   #16
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Contact info in Bufflo re:CCSVI.Be patient, they're getting a lot of interest in this





Michelle Andrews
Project Coordinator
Buffalo General Hospital
Buffalo Neuroimaging Analysis Center
100 High Street
Buffalo, NY 14203
CTEVD Study <ctevd@bnac.net>
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Old 11-24-2009, 06:17 AM   #17
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Any PP's do stem cell therapy?
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Old 11-26-2009, 01:05 PM   #18
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Quote:
Originally Posted by kicker View Post
Any PP's do stem cell therapy?
I just want to be a lab rat and give it a try. I think studies are being done in Israel. Too long a commute but it sure would be cool to see the Wailing Wall.
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Old 11-27-2009, 03:56 PM   #19
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So it's settled, we'll go to Israel - ah one problem - you paying? Or shall we just do lunch?
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Old 11-29-2009, 02:07 PM   #20
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Maybe we can get a group rate.

I have a feeling that my MS (1st symptoms in 1964), is too old for a cure. I think LDN has been keeping me from progressing in disability (except for my age), for the last 6+ yrs.

If this treatment can do this for you PPMSers and SPMSers, I say go for it. All surgery is dangerous, but certainly not moreso and perhaps less than the DMDs offered.
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