[Judy2]

Hi Karen (ms blue eyes)..........Yep, Judy is fine, the "2" was for posting difficulties. I'll be back later to "talk" but wanted to say hello and welcome. Having too much pain at the moment to think clearly. .......

[kicker]

The Wheelchair Kamikaze (who may have PPMS or not, doctors aren't 100% sure though he is dxed PPMS) calls PPMS "The red-headed stepchild of an orphan disease (MS). " Being a red-headed orphan (until I went white/grey - now I look like a pumpkin spice latte with whipped cream on top) with PPMS I get it.

Miss Blue eyes, wish I didn't have to welcome you to the club.

[msbluis]

From Sally - only five (5!!) years ago, but still a good question:

"That's my question....What reasons did your MS Neuro give you, for a DX of PPMS? Do you feel like you are constantly progressing in disease and disability? Do you reach a plateau, when you stop progressing, for a time?"
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
My first neuro showed me as RR. After 8 years of CRABs, 3 rounds of Novantrone and several years of continuous-with-no-remissions-(ever)-debilitating progression, plus a consult from an MS Specialist in Birmingham, finally!

Lucky me, I'm PP.

It's been almost 20 years with PPMS. I'm now at a depressingly high number on the old Kurtske EDSS. Although I'm still at home with a part-time HHA, my next move will be to a nursing home, probably within two years. Hubby and I have discussed it.

Karen

[kicker]

I think my neurologist knew right away it was PPMS as I also suspected. He did not diagnose me with that right away in order to give me the time to try a DMD as insurance companies will not allow them for other than RRMS. After a long time of giving it a try (with no success) he wrote PPMS on my file. My current neurologist talks, is very receptive (my e-mails answered within 12 hours or less) and treats symptoms. He is good, if anything comes up not in his field, notes it and refers me out. His rating by patients on-line gives ghim 5 stars and calls him compassionate. I copy and send him. But all my tests were almost trxt-book MS results and my anecdotal history very PP, not everyone's MS is so clear-cut.

[msbluis]

Originally Posted by kicker

I think my neurologist knew right away it was PPMS as I also suspected. He did not diagnose me with that right away in order to give me the time to try a DMD as insurance companies will not allow them for other than RRMS. After a long time of giving it a try (with no success) he wrote PPMS on my file. My current neurologist talks, is very receptive (my e-mails answered within 12 hours or less) and treats symptoms. He is good, if anything comes up not in his field, notes it and refers me out. His rating by patients on-line gives ghim 5 stars and calls him compassionate. I copy and send him. But all my tests were almost trxt-book MS results and my anecdotal history very PP, not everyone's MS is so clear-cut.

My neuro and yours must have gone to the same school. I also realize he showed me as RR to get insurance to pay. I like to think he meant well, but my DH was sure ticked off (at me!) when I told him I chose to stop all CRABs due to ineffectiveness. He believed the typical neuro quote "You don't know how much worse you might be if you hadn't (or don't) continue taking it."

He wanted me to try another chemo, Cytoxin. I said no. When he reccomended Tysabri, I asked him if he had ANY PP patients on it that had shown a slowing of progression, (he's part of a large group of MS specialists in Atlanta), and he said no.

So I said "No", as well.

Now at my annual appointment he kindly smiles, chats, and apologizes for not having anything now nor on the immediate horizon for PP. I hope for others that they find something soon to help.

Karen

[biddi4]

Hi, I posted on the introduction page, so many of you may have read this. But I thought I would put it over here as well.

I have ppms, diagnosed a year ago after 3 years of symptoms. I'm a 49 y/o male, but feel 90 lately.

I'm basically struggling with how slow my progression is. (I know, weird)
I know things are changing, but according to others, I should be getting ready for a walker or cane by now lol. I will say this summer I can almost see a day where that might my reality in a year or so.

I would really like to share stories and symptoms with other to see how I fit in to the progression timeline. Here's a short version of my story:

"Suddenly in March of '11 my entire right side seemed numb-ish, and tingly. My bp was very high, so off to the ER. All tests negative. No obvious stroke, etc. Did a few weeks of physical therapy just in case it was a tiny stroke.

I felt a little stronger, but the tingly/numb feeling stayed. So I tried to resume my life. All though I quit my job as a truck driver because my foot never felt right again.

Along with the numbness, I had incredible fatigue. HAD to nap about every six hours for a few weeks, then that seemed to improve slightly. So a year went by with every activity I did being limited by this fatigue and I noticed my right side actually feeling weaker. So I went to a neurologist and got a work up.

My exam was ok except for some pretty bad balance issues, hyperreflexia, and ankle clonus (sustained).

So All the usual blood tests were taken Lupus, Lyme, AIDS, etc. All neg. Then the spinal tap, which showed multiple oligoclonal bands. So, likely MS because the brain and spinal mri's were still negative. This was fall of '12. So that doc suggested copaxone. I simply could NOT give myself the shot, so I stopped it. Plus this doc said secondary progressive, which it's not really intended for anyway.

So, I still continued on assuming it was MS, but kind of wondering why I wasn't having any remittance, or worsening (to speak of). But through 2013, it was feeling more obvious that something was changing because my left foot was starting to feel like my right, and the right side continued to get weaker, so I went to an MS center in Ohio, and there they got a better MRI which did show lesions in my neck area, so with that and my presentation he went with ppms. (Currently both feet have numb patches, I am weak all over. Arms, legs, torso, etc. My head always feels like I have a hangover. Just fuzzy, thick. Like the beginning of a flu. Been like that since the start.)

So now, a year later, I am worse but not like some. I can walk, just if I do walk any distance, like through a grocery store or something my legs get super weak and wobbly. So I'm very limited in what I can do. I couldn't even go for a 3/4 mile walk without suffering for 3-4 days. But I begin to wonder if maybe I'm taking too much baclofen, or I actually am getting weaker. Also, in the past 2-3 weeks, my right arm feels like there is a sleeve over it, and it's getting weaker. I almost dropped a pot of hot noodles draining water out."

[SallyC]

Welcome Biddi..

[kicker]

All PPMSers differ. I was fine, fine, fine, fine but at 46 had to pee a lot, felt dizzy-ish. A little worse all the time then boom, classified and almost text book PPMS.

As I do, like to be prepared (guess it's the Girl Scout in me) I knew it was getting worse so had Canadian crutches (highly recommend), walker, wheel chair before need arose. Being ready does not make it happen sooner, it gets you mobile quicker with less little decision thinking time. But that's me.

The doctor at JH I like is leaving, research headed, MS or ON I think, I don't know right now. A new person is coming soon, from NIH. Nothing anyone can do for me, but hope I like her.

[agate]

kicker, that seems smart to me--acquiring a wheelchair, walker, and Canadian crutches before the need arises.

I have a walker that I've had for 30 years. I hardly ever use it, and if I do use it, it's to help me to get up out of bed when I'm too weak. It's very handy and when I need it, I need it now.

There have been a couple of times when one leg just wouldn't work. That walker was very helpful.

[MSbelle]

I just joined these boards but I think I probably have PPMS. My neuro is not agreeing with me because a) I'm only 29 (turning 30 this month though!), b) I was only diagnosed with MS a year ago, and c) there are no treatments for PPMS.

I have brain lesions but I also have plenty of spinal lesions that extend into my upper L-spine.

My first symptoms was numbness in my legs and bladder urgency. It's progressed to now having extreme bladder problems (trouble voiding and living in adult underwear) and needing a cane to walk. I can't pinpoint relapses, it's been a gradual but relatively fast progression to where I'm at now.

My neuro is not willing to give up on me and is starting me on Betaseron this week. I'm not as confident that there will be results as I would be if I had clear RRMS.