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. :Sob:.......:hug:

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.

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

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

Compare notes??
 

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."

Welcome Biddi..:)

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.

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.

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.

MSbelle, your doctor probably doesn't want to classify you as having PPMS (even if he believes you do) as insurance will not cover any DMD's for folks diagnosed as PPMS.

I think I'm SPMS but I'm still listed as RRMS on my medical records because my neuro wants to keep me on Tecfidera. Maybe he's right....maybe I'm not yet to the SPMS or PPMS point but some days it feels like it!

I've been reading about Tysabri having some positive effects on PPMS. I'd REALLY like to just go straight to this medication but insurance won't let me. And we're not millionaires so we can't afford it out of pocket.

Has anyone heard of LEMTRADA? My neuro mentioned that that would be the one he'd like me to start on first... seems rather extreme (it basically knocks out your immune system so that it can rebuild)... 5 infusions over 5 days, then a year later, 3 infusions over 3 days and you're done. It's risky though, of course. There have been deaths. And it's 95,000$.

I think he thinks it could help with PPMS, though he won't say it ;)

Have you tried to see if there are any patient assistance programs (PAPs) for Tysabri?

It's the only reason I'm able to be on Tecfidera. There's no way I could afford the nearly $5K a month this drug costs. :eek:

It might be in your best interest to explore what drugs have a patient assistance program. You can see if you qualify even if you have medical insurance.

Usually the drug itself has something on its website regarding patient assistance.

http://www.tysabri.com/support/cost

Good luck! :)

Questions about PPMS
 

Hello all. I don't have PPMS, but my ex husband was just diagnosed. It's very hard to accept his diagnosis even though I know he has it. (10 years together and he is a big hypochondriac). I'm trying to do research on his illness.

May i ask, how long after diagnosis have people experience bad symptoms such as a weird slide gait with one leg one minute and running around a horse arena the next?

In NO way am I being disrespectful. I'm just trying to understand this illness.

Thank you

You can't. There is no timeline, no telling. MS is very unpredictable. Somebody said "If you've seen one case of MS you've seen one case,"

This is great! SO TRUE! I will use this saying from now on probably daily!

Go to Braintalk.org and search for some good info about Lemtrada...
 

Hi,
Sorry I am so lazy that I did not copy and post the Lemtrada info! But it is on the Braintalk site...on the first page of General answers....

If you do not find it let me know. Lemtrada was called campath while being developed.
Linda

Hi Sally, I am new here and this is my first reply. I was dx. SPMS when I changed to a new neurologist after being tired of 5min. visits with the neuro that dx. me in 2000 with RRMS, even though it was determined that I have had MS since I was 19 and I am 47 now. I had started having nerve pain in both hands and both feet and my old neuro would only give me one vicodin per day after maxing me out on neurotin was not working then sent me to pain control. I explained all my symptoms to my new neuro and he changed my dx to SPMS at my 1st visit. He said that since I had not really had improvement, but constant pain and fatigue issues, along with a few years of getting IV and by mouth steroids for what seemed to be exacerbations but no improvement that it was obvious that I had moved on to SPMS. I have not noticed massive changes, maybe small things cognitively and have not had IV steroids except once for an active lesion since around 2010 I think. My memory is poor, and my husband that was my "memory" among so many other things, passed away this past March 2014, so I can't ask him the date sadly. I hope this helps some. Love, Hugs and Prayers, Linda

Hi Linda and welcome to our little abode..:) .It's late and I'm just about to hit the hay,
but wanted to welcome you and tell you how happy we are to have you here.:hug:

"[May i ask, how long after diagnosis have people experience bad symptoms such as a weird slide gait with one leg one minute and running around a horse arena the next?*"


That is a good and reasonable question.

I'm 60 and I've had PPMS for 20 years, so I feel I can answer based on my and other PP folks' experiences I've come across.

For MS to be classified as Primary Progressive, any weakening or loss of body function caused by MS never improves. In fact it will continue to progress to the point of total inability to function, if not completely, to the point of near uselessness.

For example, when I first began to have foot drop, after 4-6 weeks it progressed to foot drag, then to leg drag, then progressed to an inability to lift the foot and leg all together. I'd have to lift my leg into my car or up any stairs with my hands. It took about 2-2.5 years to completely lose all use of each appendage.

During that time the bladder quit working correctly and after trying several bladder meds like Oxybutenin, Detrol and Ditropan I did intermittant catheterisation for a few years until I could no longer transfer to a toilet, and now I've had a suprapubic indwelling catheter for 4 years.

My left arm is now useless and my right hand and arm operate at about 50% now. I can't write legibly any more, feeding myself is difficult and messy, but I can do it if someone cuts it up for me. The way I've progressed, I will be unable to feed myself any longer in 6-12 months.

No matter how reputable the neurologist or how promisingly hopeful the meds, (the CRABS, Novantrone, Tysabri, steroids and IV's), nothing has been proven yet to slow or stop progression in PPMS, not meds, not diet, not exercise. Odds are good that other's PPMS progresses something similarly.

If other folks MS has progressed much differently than mine, I think other people with PPMS would like to know.

Great post Msbluis. Thanks..:hug:

I have a few questions for anyone with PPMS.... how quickly has your disease progression been? How old were you when you first started having symptoms? What's your lesion load like? Do you have a lot of spinal lesions (and few brain lesions)? Had anyone heard anything about chemotherapy treating PPMS?

I am 30, was diagnosed just over a year ago with RRMS, though my disease looks a lot more like PPMS (though my neuro won't dx me with PP yet since he wants to try DMDs with the hope it's RR). I have a lot of spinal lesions (even one at L1!). I also have brain lesions. My progression has been fast. I'm not sure if that's typical of PPMS or not. But I don't have remissions and I have had a couple times where I've felt like things got worse sort of suddenly, I have never recovered from anything. Most of my days are worse than the previous one.

I'd really like to hear from others. Thanks in advance.

I guess there's no answer to whether fast or slow progression is normal with PPMS because it could go either way.
How on Earth do you cope with this diagnosis? How long did it take for you to get the diagnosis? Did you know before that it was PP but first dx with RR?

Hi MSBelle. Most PWMS DXed with RRMS, to be eligible for the meds.
Then you wait 6MO to a Year, to see how it progresses. Steady prog-
ression with no pronounced remissions, is usually then DX as PPMS.

SPMS usually happens, when RRMS stops having reg attacks and your
MS slowly progresses, usually reaching a plateau and stays there.
That is where I am now, with LDN, hopefully, keeping me there.:)

Yeah after 13 years of being RR it seems my remissions aren't quite full recovery anymore. I am getting lasting problems that aren't going away such as walking is significantly worse than just two years ago and the bladder urgency(leaks) are way worse and don't go away, even with any sort of meds. I believe I am entering or have had entered the secondary stage, but neuro insist the time intervals aren't pointing that way just yet....pffftttt it sure as hell feels like it is. I just turned 40 so I guess natural aging with MS makes things a little harder....I dunno...it all just blows:p

I am 59, dxed with PPMS in 2002. For years I thought despite things I read "This isn't so devastating" Then boom, boom, boom. Foot drag, Canadian crutches, walker, power chair, pain and discomfort, on various meds for incontinence, but never a spasm. Now, no pain, left side does not work but can feel a hair, ib a chair but seem plateaued. WTF!?? Always waiting for the other shoe to drop. The years before dx and a few years before and after were wham bam. But now never nap, take Amantadin and nothing else, No meds (Oxybutin, etc.),dry mouth seems better. Don't know what to expect. I play it day by day.I still can't walk and pee every 3 hours but sleep through night.

Can self-toilet with one leg pivot and grab bar. Yes, it is sad I have that to be proud of.

Time to buy a new chair. Since I am 24/7 in a power chair, this is important (and very $$$!)

Any advice. Do know I want dependable (been pleased by my Invacare TDX-SP), tilt mechanism. flip up footrest (must have for self-toileting, air,gel cushion. Any thoughts? Experiences? Can't get on a scooter.

Why not get another Invacare TDX-SP? Looks to me as if it has a flip up footrest but I did find this announcement on the Webpage:

Not sure what that means but is there a reason why you need to get a new chair, kicker?

I've been lucky enough not to need a power chair but have a manual one and have tried a few power chairs. I haven't had enough experience with them to know anything much. I'd be inclined to go for the lightest weight chair I could find but that might mean a less stable chair, and that wouldn't be safe.

Interesting study going on in Australia for SPMS Med
 

Progression Plateau
 

Hi Kicker,
I would consider your halt in progression something to be VERY pleased about. Let's hope it's permanent!

Have you met with your neuro and asked him or her about their knowledge of progression stopping?

We all wish the best for you ...maybe you could clone your blood/nervous system and share your unique good fortune!

Wishing you the best!

My heart is broken. My neuro left me. Well, not just me, the hospital he was with. He's gone into research, I told him to call me if he finds a cure:D.

We had years together but doctors leave (like they have their own lives or something!). If a problem came up he answered my e-mail within 24 hours, usually sooner. He never pretended he was going to cure me of PP but helped any problems I got. I have a new doctor, sure she's very capable (from NIH, now with Johns Hopkins (I'm very close to Baltimore) but I'll be 60 this year, I don't see much happening. I'm either plateauing or something, swear I pee less and (knock wood) haven't had UTI's in years. Used to get them a lot, had one I called UTI from Hell. Now although in a chair, not always sure if it's age or MS affecting me. But who knows what will happen tomorrow? Always waiting for the other shoe to drop.

I know MS put me in a chair but other stuff, well I don't know what causes it. Friends my age are getting stuff and don't have MS.

I don't know if it's any comfort to you, but at least two people around here are about 15 years older than you and still coping. One of them is myself.

I recently read something in the research on MS stating that in some people MS seems to reach a plateau after a certain age--I believe it was around 55. It doesn't get any better but if it gets worse, it's a very slow worsening, hardly noticeable.

I'm sorry I don't have a link to that article handy.

Agate, you do make me feel better. Nobody has a Crystal ball, stuff happens to everyone (nobody goes through untouched) but worry never stops stuff from happening. Shoot, I don't like MS but don't like this aging stuff either!

I resemble that remark..:D

I'm one of those who is 61, dx'd at age 41, PPMS.

Maybe I'm in the minority, but my progression has been at the same rate all 20 years. Almost too predictable. I go between 2 and 3 years between the loss of functions. True examples;
1995 Dx'd after all tests: Oligloconal band -just one -.showed in LP. Bloodwork ruled out things like Lyme Disease, Deer Tick & a host of other stuff. Brain MRI showed, "lesions too numerous to count". Dizziness when standing with eyes closed, as during showers. Heat causing weakness of all extremities also bladder becoming over-active. MRI's of C and T spine. Numerous lesions, some spanning two or more vertabrae.
1998 Extreme heat weakening, using one cane to walk, left leg quits when it's tired. Still drive but must lift left leg into car.

2000 Tried using two canes because both legs too weak to operate without help. Helped for a few months. Got Rollator. Worked well for about a year, until I began falling even with it. Had to begin IC. No more bladder control.
2002 - Legs no longer "listen" to me. Had to get elevator installed in garage to get 4' up to house level. WELL worth the money.
2004 New scooter. Motor could not be fixed
2006 Second new scooter.
2008 New Pride Jazzy power chair. My left hand and arm too week to guide/drive the scooter. Gained some weight. Developed really bad edema in both feet and both ankles. Doc said I needed chair w/elevating legs and tilt to change pressure points; I had Stage 2 pressure soars on my butt. That took 6 months to heal w/help from visiting wound care nurse home visits.
2010 Oct/Nov Got suprapubic foley catheter. Got new Permobil C300 power chair. Chair rises 10", tilts and legs elevate. Definately helped with edema, but I lost weight, too.
2012 No more left hand or arm usage. Right arm weaker, won't lift above shoulder height.
2014-15 Got factory reconditioned Hill Rom Advanta hospital bed and got a good, multi-options air mattress for it. Had it a year now - still happy with it.
Bed and mattress are both awesome. No regrets.

Almost May, 2015 Legs - useless. Left arm/hand - useless. Right arm - useless. Right hand - 95% useless. No fine motor skills. Can't write. Can't hold a glass. Can't get a spoon to my mouth without spilling it's contents. Hard to stab pre-cut meat with a heavy fork; I eat with a plastic fork. Can't use any knife.

By 2016 I estimate I'll have trouble swallowing.
At that point I must consider my options. I already have my Advanced Directives. I do not want feeding or oxygen tubes, nor CPR or artificial hydration.

We'll see what's happening next year.
Karen

:circlelove: {{{{{{Karen/MSbluis}}}}}} :circlelove:

Just read and saw a video about a Neurologist who has MS himself and feels it gives him insight into his MS patients. But he seemed very RR, is very pro-Tysabri and Talks about things that are not part of my PPMS so I got disenchanted quickly with him. My old Neurologist (who did not have MS) seemed a better fit for me.

Like love and literature, doctor choices are made on what we feel is a better fit.

To Sally
 

Thanks, Sally.
Karen S