For those who have ppms, what symptoms do you have? And can you lead a normal life?
My sister can barely do anything, and mentally she is like a child of 10 (she will be 31 in June) and she is extremely confused. Does anybody have this?

I am 56, DXed with PPMS in 2002, now I am in a chair 24/7, minimal pain, cognitive seems fine (to me, DH might have a different take.) Sometimes when I hear stories. RR seems really bad and awful to me but sometimes I wish I remitted once in awhile (Maybe I just want no MS for awhile!) but realize so far, so good for me. I do get a swing in affect sometimes but recognize it and have strategies to try and deal with it. I have never has any MS related vision problems or a definite "AHA" second of "Oh, that's the MS hug." I have no numbness, tingling or spasms. I've never done steroids (doubt they would even do anything for me) but realize in a New York minute everything could change with MS.

Everyone's MS seems different and everyone is different and one seems able to directly compare. I am in a chair, but fairly independent. Yeah, I can't walk, but am self-toileting (Isn't it sad I'm proud of that) and cognitive seems fine. IMHO I think it best we try not to have per-conceived ideas about anyone else about anything. Carpe Diem makes such sense to me now. OK, getting off my soap-box.

I'm so sorry about your sister. Some of my biggest fears (rational or not) are in your post. Life can really be so unfair sometimes. The Universe can seem so random and uncaring sometimes. Her story touches me.

I think we should look at RR (Relapsing-Remitting), SPMS (Secondary Progressive) and PP (Primary Progressive) as terms that define a disease's presentation, not a likely progression or symptom presentation.

I think we should look at RR (Relapsing-Remitting), SPMS (Secondary Progressive) and PP (Primary Progressive) as terms that define a disease's presentation, not a likely progression or symptom presentation.

So well said!
Thank you for this


After all there are RRMS'ers who get flares once every X weeks and others once every X years.

And there are PP/SP MS'ers who progress rapidly and others slowly.

I was 1st diagnosed in 09 with RRMS, but new neuro thinks its PPMS. Not really any new symptoms but they are getting worse. I rolled around on the floor of garage trying to get in car after falling. Fortunately only my pride was hurt. I slid down wall. I lost my job Tuesday so I think alot is stress related. I'm glad I'll get severance pay for 3 months but worried about future. I'm not even 40 yet. What company is going to hire someone on the brink of being disabled?

I'm trying to look on bright side. No more getting up at 6:30 and the hazards of trying to make it to the office in one piece. At least I don't have to worry about money until Sept. I'll qualify for more programs that are income based.

Is it normal to progress so quickly? I haven't been on any DMD's since December. I'm going to start Ty hopefully in August.

I was diagnosed with PPMS right from the start of my official diagnosis in 2006, they played around for 3 years prior to that assigning labels to my illness.

I lost the ability to walk normally fairly quickly, with in a year? My legs, especially the knees always felt weak. I had random patches of numbness on my thighs, I dropped things, dizziness, vertigo, motion sickness. My stomach, bladder and bowels rarely feel quite right.

Things for me have just progressed, I didn`t buy into any of the treatment plans to try and slow the progression, I felt the risks far outweighed any possible gain.

I am in the process of losing the use of my left arm, my feet always seem to feel numb, I get terrible legs cramps, the MS hug occasionaly. The heat affects me badly, I feel fatigued constantly.

No depression and few if any cognitive issues, I diagnosed myself a year and a half in, and spent another year and a half playing around with doctors that had cognitive issues until I went to a specialist that ordered the proper testing to confirm my diagnosis.

LOL, I only act crazy, it keeps people that only think they are normal at a distance. I guess it is one of the benefits of a late onset? I never figured I would make it out of this life alive anyway.

I am more or less stuck around the home and yard 24/7, but I have done enough in life to be content with that reality. Oh no! wer`re all going to die! LOL

I do feel sorry for the younger folks that never get the chances I had. I used and misused a lot of them.

Sleeper, you described my own symptoms exactly! My Neuro still says RRMS for me but I think otherwise. I think he might be holding out hope that I might try one of the DMD's in the future.

Cognitive issues rarely.....unless I really think about it and then I can convince myself of just about anything.

Sadsister, has your sister had any cognitive testing done? It sounds like she might have something in addition to the MS going on. Might be worth looking into.

OK, transfer this thread over to the serious section. It's muddying up the waters over here..

Ma'am, yes ma'am!

Attached Images

FG.jpg (3.1 KB, 415 views)

Thank you to all for your replies! I understand it a little better!
But what is cognitive testing?? Never heard of it?

My sister was diagnosed with PPMS 4 years ago, ans she also progressed very quickly
She used to be a very bright person but now is like a child of 10,
She was married for 4 months but after she became ill and bound to a wheelchair her 'husband' left her! A week ago she watched a program called 'doctor Oz' and after the program she told me the doctor said she must go on a diet, after an hour of trying to figure out what doctor told her that, I realised she was talking about doctor Oz, how do we handle these situations? And yesterday she asked me to kill her... Seems like we have to ask the neuro to give her stronger anti depressants.

Once again thank you all for your replies, and my heart goes out to you all! Your stories have touched my heart deeply!

Here's a good article that explains it well:

http://www.nlm.nih.gov/medlineplus/e...cle/003326.htm