Prognosis for progressive MS?

[J-Bo]

Are there any available statistics about how likely total disability for people with progressive forms of MS is? When reading different sources that talk about disability, I've seen statements like "Most people with MS retain their ability to walk and do not need a wheelchair" and similar things about being bedridden, etc. It didn't occur to me until today that maybe that's only true for the majority of MSers, not us. Does anyone know?

[Boognish]

Well I have had PPMS for 8 years and can barely transfer to wheelchair. My legs are burning/freezing exploding with pain constantly. I'm considering just having my spinal cord cut. I'm not holding out hope for any MS "cure" anymore. I don't think there will be one in my lifetime and I'm just 36. I was told I would probably never need a wheelchair. They say the first 10 years will probably predict your prognosis. This is my two cents. [/I]

[Cat Mom]

Statistics only, NOT personal experience...

50% of RRMS patients turn SPMS within 10 years, 90% within 25 years.

Jen

[sniper762]

MY PPMS PROGRESSION


13 DECEMBER 2005


I was first diagnosed with MS in August of 2002. My first symptoms were constant dizziness and difficulty maintain my balance while walking on uneven ground, such as encountered while walking through the woods during hunting. I was tested for possible inner ear problems and tested to see if my vision and inner ear were in sync with one another. Then I would experience temporary paralysis of my left leg when I would run (2 mile run every other day for pt at work). I would even get unusually fatigued faster when doing my pushups and sit-ups finally, the doctor did an MRI and a spinal tap that confirmed my ms diagnosis. At first the doctor said that it was probably RRMS but me not having any relapses, it was determined to be PPMS.

Well, after a lot of doctor’s visits and many tests, I was finally medically discharged (It’s mandatory upon a neurological disease diagnosis) from the military on 20 December 2003. I was discharged with a medical discharge (60% temporarily disabled) from the Army. I was to receive about $1500.00 month with the federal tax withheld. VA was paying part of that and the Army part. I was told that I could also draw Social Security disability, but I would have to wait 6 months after discharge before I could start drawing it.

This made things quite financially tough. Between the $1600.00 per month non.-taxable from SS and the Army retirement, my income would be about the same as when I was working. Then in May of 2004, I had applied for VA’s non-employability benefits in which I would receive the same as if I were 100% disabled. I was awarded that in November of 2004 and began getting $2500.00 per month non-taxable from them. So now I get about $1000.00 per month more than when I was working. GREAT!

25 OCTOBER 2007

I finally got everything finished In Dec 2006 with VA on the van. They paid $30,000.00 of the total $49,000.00 which I financed the remainder with SECU for a variable rate of 5.5% APR and payments of 5 years at $378.00 per month

I don’t walk at all now and transferring from my chair is still being done, but difficult. Driving has become too difficult for me so as of a few weeks ago, I have stopped trying to drive. If I need to go anywhere, then I can wheel into the ramp van and Paula can take me

10 SEPTEMBER 2008

Although I am disabled to the point that I can’t walk or stand, I find things to do that occupy my time each day. My wife gets me dressed each morning and helps me out of bed and into my wheelchair. From there I go to the living room, where she helps me transfer into the lounge lift chair where I remain all day while she’s at work. Being that I can’t get up, I wear Depends disposable diapers. When I have a bowl movement, my wife cleans me up and changes me like a baby. I use a urinal for urination during the day and night. I have the telephone, the television remote, and the Bose radio system remote at my reach so that I may use at my desire. I sometimes listen to the radio, watch television, mostly discovery channel, history channel, military channel, national geographic channel or outdoor channel programs and documentaries that either are showing or I have previously recorded or I also have a CB radio (wild turkey) and a ham radio (KI4JDX) next to me that I sometimes talk on.

VA has given me a Jazzy electric wheel chair and also they have paid $3400 to put ramps to the house and rails on the walls. I am waiting now for them to approve monetary assistance for a handicap van with remote control door, ramp and hydraulic lowering system

24 March 2010

VA has given me another chair, one that reclines and has leg reclining extensions. They paid half of the cost of a$50k ramp van in 2008 and every two years they replace it with a new one for no additional cost. They just replaced it with a 2010 Toyota Seneca. I don’t drive now, but my wife carries me wherever I need to go. I applied, last year for a $60K Special Housing Adaptability grant which was approved this year.

They began, in January, after getting the contractor’s estimates, permits and inspections, building a 12 x 12 additional handicap accessible bathroom, with barrier free shower, adding a new air conditioner to accommodate it, extending the deck to the room, putting a roof over it with lights and fans and paving the drive to accommodate me taking my wheel chair to check the mail. They are almost through.


5 MAY 2010

I submitted this story to the National MS Society.

A writer, I am not. Nevertheless, I would like to share my story with the many who have found themselves under the influence of this dreadful disease.

I begin by saying that I consider none to have been any more active than myself. I spent 18 years in the US Army (of which I was mandatorily discharged in 2003 at age 46 due to my then recent diagnosis of ms), was an avid hunter, shooter, fisherman, trapper, hiker, runner, ball player, bowler and gardener among participating in many other interests and hobbies requiring the utmost of activity.

At first it was thought that my ms with the onset of constant dizziness, sudden temporary paralysis in my leg weaknesses and fatigue might be RRMS. Since I never had any relapses, just a constant debilitation, the doctors labeled it to be PPMS. I went from originally walking with a cane to needing a walker to a wheelchair. I now am bedridden. I can’t sit up or get out of the bed on my own, my arms and hands have limited use.

My wife and I have raised three sons (all grown now) and my youngest has witnessed the rapid advancement of my disability. I used several of the therapeutic drugs for several years with no positive effects (Avonex for 1 ½ years and then Copaxone for 2 years). Although statistics show that these drugs have no effect on PPMS, my doctor wants to give them a try anyways, hoping that I may be an exception to the rule and receive positive benefits (At about $1500 a month cost, it’s probably just their contribution to the drug industry). Thankfully, I have no current pain.

Although I am aware of the usually accompanied depression associated with the disease, I have not experienced it. I remain mentally upbeat and keep a positive outlook. I occupy my time by watching TV, listening to music, talking all over the world on ham radio, reading and surfing the internet. I take pride in my past accomplishments, cherish my memories and love to share them with others.

The VA and SS disability compensation are financially sufficient and I have taken full advantage of the grants and the services that the VA offers. I am thankful for the ms society's many services such as the magazine and the online chat rooms and info available to keep me informed. Although, I seem to be in a very small percentage (10%), of the ms group, I try to keep company with them. I have heard of those with ms that are completely paralyzed from the neck down. It is my wish that that those affected minimally by ms, are not intimidated by my condition, yet understand that ms effects differently to different individuals.

I have a Facebook account and my email address is **email address removed as per MSWorld guidelines - this may be manually put in your profile for registered, logged-in members to see**and I welcome any visitors.

6 JUNE 2011
Around the beginning of the year I started using an external catheter at night. I would have muscle spasms and spill my urinal in the bed sometimes when I used it. I can still manage the urinal during the day though. I have difficulty turning over in bed, something I must do often to avoid pain in my legs and arms due to lying in the same motionless position. I manage to turn over with the aid of the attached bed rail but I sometimes need help uncrossing my legs. I have to keep my feet out from under the cover for they stay hot all the time.

When I get hot, from hot bath water, summer temperatures or fever from the onset of a flu bug or virus my ms is exaggerated and I become very weak, sometimes to the point of not being able to even move my arms, hold my head up or even speak clearly. This makes it difficult for my wife to handle me (dead weight) and sometime I am transferred to the VA Hospital via ambulance. I have been there several times in the past few years with diagnosises of urinary tract infection or dehydration (my bad; I don’t drink adequately). As of June of 2010 VA has been sending a home health care person to my home for 2 1/2 hours daily M-F to help with feeding and personal hygiene. I can feed myself with finger foods, burgers and sandwiches but I can’t manage utensils. I drink through a straw or sippy cup.

8 JULY 2012
I now use the catheder all the time. I can’t turn over in bed now or raise my hands enough to scratch the back of my head. When I go to the doctor, I sometimes give out of hand strength and cannot even work the joy stick on my power chair. It’s even sometimes hard to press this mouse button to operate the onscreen keyboard.

8 AUGUST 2013
VA has now fitted my power chair with controls on the back where my wife can walk behind me and operate the chair during my episodes of extreme weekness.

[J-Bo]

OK, maybe if I ask it in another way:

Does anyone know what percentage of people with PPMS eventually wind up totally disabled? 100%, 50%, something in between?

And thanks to those who shared their stories. I'm sorry that it's been so difficult.

[celeste]

It depends on what you mean by totally disabled. As far as Social Security and my employer are concerned, I'm 100% disabled & I can no longer work at any occupation.

However, I can still use my upper body & walk a short distance with a KAFO and a walker so I don't consider myself 100% disabled.

My feeling is that everyone with PPMS will, at some point, no longer be able to work.

Sadly, I also think that unless we are lucky enough to die from something else (hopefully old age) we'll all become bedridden & completely dependent on others.