[ms er since '06]

Originally Posted by kicker

We have 2 dogs, neither a working dog, just mutts from the pound but both would do what they could in a situation. I do love them both, I'm never alone. I always carry my cell phone to call the EMTs when I've fallen and can't get up. I can be sort of dignified with them in my underwear when needed. If I couldn't laugh, I'd always be crying. MS sucks no matter what kind.

A month ago my doctor told me I was SPMS, then she sent me to another doctor to see if he agreed with the treatment she's recommending. He told me I am PPMS. I asked the first doctor about this and she said they are both progressive and similar and it's just semantics.

Whatever.

[AstaireGal]

Originally Posted by ms er since '06

A month ago my doctor told me I was SPMS, then she sent me to another doctor to see if he agreed with the treatment she's recommending. He told me I am PPMS. I asked the first doctor about this and she said they are both progressive and similar and it's just semantics.

Whatever.

This is my first time to this group and my first time posting, so, if I mess this up - sorry! Anyway, I have PPMS and have been looking for a group to join where others know what PPMS is and can share in advice, support and such. If anyone reads this, will you please let me know I'm in the right place and on the right track? Thanks!

[AstaireGal]

Originally Posted by ms er since '06

A month ago my doctor told me I was SPMS, then she sent me to another doctor to see if he agreed with the treatment she's recommending. He told me I am PPMS. I asked the first doctor about this and she said they are both progressive and similar and it's just semantics.

Whatever.

I know your post has already been replied to, but, I felt I needed to add my "2 cents" as it were. PPMS is PPMS from DAY ONE. SPMS is almost always a secondary phase of RRMS. Yes, once you have SPMS you are similar to PPMS because you are continually progressing (maybe quickly, maybe slowly.) It is NOT just a matter of semantics, as your dr put it. I wish more drs were more communicative and took the time to explain things. I know this doesn't really "help" in any real way, but, I wanted to share my viewpoint with you.

[MSbelle]

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.

[Kitty]

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!

[SwanLake]

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

[kicker]

Originally Posted by SwanLake

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,"

[MSbelle]

Originally Posted by kicker

"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!

[msbluis]

"[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.

[SallyC]

Great post Msbluis. Thanks..