[msbluis]

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!

[kicker]

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.

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.

[kicker]

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.

[agate]

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.

[kicker]

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!

[SallyC]

Originally Posted by agate

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 resemble that remark..

[msbluis]

Originally Posted by agate

I don't

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,

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

[SallyC]

{{{{{{Karen/MSbluis}}}}}}

[kicker]

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.

[msbluis]

Originally Posted by SallyC

{{{{{{Karen/MSbluis}}}}}}

Thanks, Sally.
Karen S