MS Disability

[Kurt25]

I hope this will not sound as a rude question, especially that it is comming from a non diagnosed member.
I wonder what kind of MS disability you have and at what year after being diagnosed with MS it happened.

The reason I am asking is due to the fact that some people are affected by MS more severely than others, I watched some you tube videos where the patients were wheelchair bound 5 years from diagnosis, it made me curious if this is normal or not.

Thanks for sharing.

[SarahL2491]

Time to make THAT call Doni

Stay out of that AL heat this summer!

[doni54]

I know how you feel about losing the use of your hands!  

I am still undx, with a MS neuro saying he KNOWS it's MS, just wants to wait a bit longer before giving me my clinical dx.......

I am one who loved to woodwork, make jewelry and as you say, could type like crazy...haha  Now, between the cognitive issues and the hands not working right, I'm a typing mess.

Now too, even trying to cut up veggies is a horrendous chore, guess I need to get me one of those choppers!!

Good luck to you and hope maybe that the hands will improve for you.

Doni

[crwriter]

I was just diagnosed last April, but my current and very ms-savy neuro said I have had this for decades.  Makes sense because when I tried going to the gym over a decade ago, exercise that I should have found invigorating just made me very very tired.  And in 2010, I begged my pcp to help me find out what was wrong because I was losing my hands, he just looked at me dumbfounded.

[Kurt25]

Sorry to hear about your difficulties Crwriter, how long have you been dealing with MS for?

Thanks all for sharing.

[crwriter]

I am slowly losing the use of my hands, and I find this most painful.  I write and the keyboard was my piano.  I used to be able to type just about as fast as I could think and now I fumble along.  I guess I can look at it as a fond memory.
I also used to craft wood around repairs to my house.  My son and friend just gutted a bathroom, and the only thing I was good for was directing traffic – fleshing out the finer parts.  Like, “put that there” or “watch it when you do that.”  I often say that this slow decline of skills comes to us all anyway.  Just happening earlier for me.

Falling is a fear of mine.  No more moving up and down the stairs in a flash.  Movement - I crave movement.  Not to be for me anymore.

[Guitar_grrrl]

Like JJ said, the day you're diagnosed with MS is different than how long you may have had it.  I had 20+ years of symptoms before being diagnosed.  That said, I'm still in the BYLSG club (But You Look So Good).  I still ride my bike, raft, camp, garden, play my guitar, etc., despite having spasticity, spasms, grinding fatigue, occasional TN...

Everybody's MS is their own.

[twopack]

Decisions about disability are based on whether a person's health status prevents them from remaining gainfully employed.  In fact, there is no specific requirement to have a diagnosed illness at all - only a proven limitation that is expected to render a person unable to work for a minimum of one year.  Some diseases (like ALS) have been specifically named so people can be fast-tracked for approval of benefits.  MS is not one of those.

It is my understanding that oppressive fatigue (or sometimes cognitive difficulty) is the much more common reason PwMS find they can no longer function well enough to continue working.

If your question was more about MS progression than disability qualifications, it looks like others members already covered it well.  MS, to say the least, is very unpredictable but VERY FEW PwMS in my experience are confined to wheelchair use within five years of diagnosis.

Mary

[jumpinjiminy]

My grandfather was diagnosed at age 30 and ended up in a wheelchair around 60-65. He had one big attack that did it. No treatments back then like they have now for severe attacks: IVSM, IVIG, plasmaphereis, etc. He was asked to leave his job just before turning 50. Again, no disability laws back then either. Like said above, everyone is different.

My family have always been the type to cook everything from scratch and grow their own gardens, can their own veggies, and grandparents raised their own meat for many years. I can't help but think that maybe helped him last so long during those years without any treatments.

My GP seems to believe that since I've followed in their footsteps and up until these last few years (when it all started to surface in a more obvious way) avoided processed and fast foods, that my diet seems to have played a big part in not having been more severely affected by whatever it is that's plaguing me.

All we can do is take the best care of ourselves that we can and hope for the best.

[rendean]

Another point to be made regarding those with MS in wheelchairs. There were no DMDs to help slow down MS before 1993. So those stricken before that time have a greater chance of needing a wheelchair.

As stated above, each case of MS is unique and no two are alike. It is impossible to gauge who will develop what symptom and if it will be permanent or transient.

Ren

[supermum_ms]

I dont think your question is rude, but i think it's one that even if everyone responds, its not really going to tell you anything. The date of dx is just the date their disease was officially recorded, it isn't the date the MS started, the most common form of MS (RRMS) can come and go for decades before MS even gets on the radar, there is no predictable time frame with any forms.

As Alex pointed out, MS is unigue to each person, common set of sx but even then, each person has their own pattern. I think if this clip gave the impression that pwMS are in wheelchairs 5 years after dx, then that is unfortunate miss information and nothing more.

Cheers..........JJ

[HVAC]

The simple answer is it all depends on which nerve gets cut. With each person with MS there is a different pattern. No doctor can look at any one of us and say where our damage will be.

I am 49 have had MS since age two and am still walking. I am slower. I ride horses. No one looking at me would know I even have MS. My symptoms are double vision, vertigo, cognitive, and now moving slower.

[TLC_31]

I’m basically just as healthy today as I was eight years ago when I was diagnosed, and many people I know don’t even realize I have MS, or they forget I have it. Many of us attack the disease with injectible drugs, lifestyle changes, etc., and live well with MS. But there is no "normal" with MS, and others' results vary.

To automatically associate MS with wheelchair use (or with anything) is like watching footage of tornado or earthquake damage in some town and assume that everybody in that town has lost their home, when in reality it’s usually a minority. Those who use wheelchairs (and those who lose their homes) are an important segment of the population, but just because they’re more visible doesn’t make them more common or more the norm.