How are my fellow PPMS's doing?

[lori]

fourtimer,

Thank you for the compliment, but you're the one staying strong in a very tough spot. What were your old names? MSworld has been a great source of information, but an even better place for caring and often very intelligent people to come and share.
lori

[fourtimer]

That was my problem Lori, I couldn't remember my name's or passwords. I believe 4-Wheeler or something along that line was one of them.

I agree with you about the intelligence of the members here. I'm just happy to find so many caring people with good ideas to share. I'm hoping someone can answer the question I posed in my last entry. Bye for now.

[lori]

while writing, if you scroll down past the submit button all the posts from the thread will show up. Is that helpful?
lori

[fourtimer]

Very much so, Lori, thank you!

[cindyworld]

Admiration for all of you!

I surely admire the strength that many of you have despite your disability. I was diagnosed with PPMS 10 months ago, yet that was the answer to symptoms that I have had for at least 10 years (I am age 54, female). I use a cane to help with balance, I am having bladder problems that will take me to the Urologist this week for a consult to see if it's time to learn about catheterization, I have a great deal of cog fog, leg pain & fatigue, etc. These symptoms are probably old hat for many of you, but I'm the new kid on the block and I have the same questions that you once had, like "how long will it be before I can't take care of myself?", etc. I don't want to be pampered or coddled, I just want the ugly truth. Any words of experience would be surely appreciated! Thanks so much!

[fourtimer]

Hello CindyWorld... There are no easy answers to your question. Everybody is different! The reason I progressed so quickly was due to my sons death.

Avoiding stress is the best advice anyone can give, but how realistic is that? You haven't put much about yourself, do you live alone?, Do you have support from family or friends? All of these things matter.

Some don't progress for months or even years, I am not saying that to coddle or pamper you, it's the truth.

Good luck to you and I hope you can find peace of mind occasionally. We all need a break from worry.

[kimmhun]

RRMS or PPMS?

Hello PPMS'ers

All of you are very inspiring! I was diagnosed with RRMS just this year (Mar 2013) But wondering if it may actually be PPMS. Since my first symptons that lead me to the Dr's office to begin testing, my symptons have been contantly progressing. No lapses.

It all started in early Dec 2012. My fingers on my left hand began tingling, then in a couple weeks, it was my wrist and fingers on the same hand along with numbness. At first, I thought it may be carpal tunnel. By the end of Jan 2013, I was having muscle spasms in the same arm to go along with the numbness and tingling. Finally, I decided to see my Dr. She ordered an MRI of my cervical spine (suprisingly) right away. She didn't say why, but I assumed she thought I might have a pinched nerve. They found an active lesion on my cervical spine. They did a brain MRI and found a few small lesions...

But back to my point, since the beginning (9 months ago), except for the muscle spasms the went away, my symptons have been continuous, but now the numbness and tingling has spread to my upper arm, my left leg, and finally my left foot. When I extend my left leg, it feels tight as if a rubber band is forcing my knee to stay bent. I also experience fatigue cog-fog, and spastic bladder. No lapses, just progression. I started taking Tecfidera 3 months ago, but too soon tell if it's helping.

I am still fully active and have no pain. My life has not changed at all so far. I know MS is different for everyone, but just wonding if anyone with PPMS can relate...

[eliden3]

New to this

Hello...I am new to this. Just diagnosed 4 days ago. What is RRMS and PPMS? I have MS. Mine started in my knees. They just blew up. Straight into pain and couldn't walk. Feels like the cartilage is stuck or lodged under my knee caps but xrays and MRI's show nothing wrong with my knees. Took 3 months then they finally did MRI of my brain (my spine is ok) and it showed MS. Just started a treatment with solumedrol. I don't know what medication I will be taking yet. It seems to help a bit, a lot of nerves firing...it's doing something....Hopefully I'll feel better. I am hoping to be able to go back to work. I don't have other symptoms now except my eyes feel tired. Doing lots of praying that I can remain relatively normal. Had no other medical problems until this...hit me like BAM! Just like that. Nice to find folks who can relate. Take care!

[JerryD]

eliden,
You will best served to get definitions of the 4 forms of MS from the NMSS site. I hope you get some clarity there.
Good luck

[Cheri-mom]

Hard reality

Hi, I have been traveling through the massage boards and reading alot not posting much, but I am happy for those that are doing well with this monster of a disease, and very sad for those that aren't. I am a mom that has a 25 year old son who has PPMS no questions about that diagnosis. He has many, many lesions throughout his brain and spine. He was diagnosed 5 years ago at age 20, before that he was fine, working full time living on his own.

We live in Ontario Canada at the time of diagnosis we were given the same speech it seems like all PPMS'rs get, sorry there are no treatments. Luckily the Toronto MS clinic offered Tony chemo treatments on the chance it would slow the progression and it did! for 3+ years he went every 8 weeks for IV Cycloposphamide (may have spelled that wrong) treatments. The progression for him (I say that because his is a very aggressive MS) did slow.
He had to stop those treatments because he reached the limit of chemo a body could take in a lifetime.
Then we tried CCSVI in California, great trip, great people, wonderful results for a few months. Then the ugly monster reared it's head again.

Today we live one day at a time, amazingly Tony has his own amazing inner strength. He is now totally dependent on others for every aspect of life,unable to do anything himself. He is legally blind, unable to move his legs, needs a tilt wheelchair because he is unable to sit up, his body is in constant motion because of severe tremors and his ataxia is so bad he can't use his arms and hands, feeding him can get very messy because his head and mouth are also affected. his speech is going, and he gets UTI's every other month because of his catheter.

I put this to you quickly and plainly because some have asked how PPMS can progress, and some have asked what end stage is, Tony has been labeld "end stage"for a few months now.
But again remember everybody's MS monster is different Tony just got a really nasty one.
Hope some of that helps, it helps me to get it out.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[misslux]

Hi Cheri, thank you for sharing and I am so sorry to hear of your son's progression.

[fourtimer]

Hi Cheri-Mom,
my heart goes out to you, as I read your post I couldn't help but worry about you. Coincidentally my son's name was Tony also. Coping with your son's condition must tear your heart apart. He sounds like a wonderful human being, this disease always seems to strike good people!

I'm so happy you posted, it does feel good to express what you're feeling to know that others will understand. I want to reach out and give you a hug, I can't physically but I can emotionally.

Please post whenever you want to and know that you are in my prayers and so is your son. You didn't say much about yourself, were you working, are you still working? I don't imagine you can now.

I am at a loss for words just know I'm praying and thinking about you and your son.