PPMS Suffers

Hi all, If you suffer from PPMS I am asking that you follow me. I would like to follow you as well. I need to learn from you. Share ideas and thoughts. I only know one person in my life that has MS. I am not looking to send anybody anything or be bombarded myself. Just looking for people that I can learn from by listening and picking your brains. Maybe you can learn from me. Who knows? Anyway, looking to build a community that I can turn to.

You are all ROCKSTARS!

15 Replies

  • Hi Rob, I remember you from a few months ago. You have a very supportive wife and son and daughter. I have PPMS but I am not on any medication for it. I am from the uk so we are a little slower at doing things so I learn a lot from all of my American friends on this forum. I am willing to answer any questions that I can as they say, 'my door is always open' as for my brain, it depends how the ms is doing? Blessings Jimeka 🦋 🌈

  • Hi rlh974, I have ppms also. If we can help each other and others as well that would be great. I was diagnosed 3- 1/2 yrs ago and still trying to figure it all out. This group of warriors is great they are always here to listen and.help.

  • mrsmike let me know if you figure it out!!!!! ;) I was diagnosed just over 2 years ago. have had it for over 12 or 13 hence the rapid decline. I am here for you! As is everyone else on here.

  • I have SPMS which gets lumped in with PPMS a lot of the time. I have had MS since my early 30's but knew I had it by age 28. I am now 68 and am in a power W/C 24/7. I do volunteer work 6 hrs a week and we have a van with a ramp so I can go and participate in life every day that I am able. I have 4 grown children and soon 12 grandchildren and of course, a supportive husband.

  • You lindance are a rockstar!

  • I have PPMS also and welcome finding out how everyone is doing and help when I can. Seems like every day is different and keeping a positive attitude is a challenge some days. Reading on this site is a blessing for me.

  • It is very difficult. I have found it easier to let go of the past, and find what you can focus on today. Like you said, everyday is so different. I have found purpose in listening to others and mentoring others. Not with MS. I am the only one I know. But through Younglife and Wyldlife, Friends on hard times. That only takes energy. No physical effort. Ok, most days no physical effort. It can be very draining physically. Especially when no one is mentoring you. That is what this site is for. We can mentor each other, love on each other and send each other back out there.

  • I have PPMS. First diagnosed with RRMS by a general neurologist in 2013. My current neurologist is a MS specialist and she has diagnosed me with PPMS. From my MRI she believes I have had MS for 20 years or more. As soon as I have insurance approval I will go on Ocrevus. My neurologist already has my dosage. She was the first doctor in California to do an infusion. I will let you know how it goes. She said to be on Ocrevus for at least two years before we decide if it is right for me.

  • I recently was quietly told that I had advanced to the PPMS stage. Officially diagnosed with RRMS in 2011, a review of military medical records indicated symptoms had been noted as early as 1998. Oh well...better late, than never. My symptoms were thought to be sciatic nerve related. I was using Copaxone since dx, changed to Tecfidera for 9 months, and returned to Copaxone. My neuro recommends I try Ocrevus, however I believe I will monitor other folks results for a while. I feel certain that a method utilizing bone marrow, or stem cells, will be the answer.

    Rob, while I understand your message about letting go the past, I find it comforting to recall the "special" memories of the past. Sure, many are memories of what I "used to do", but no longer can. I used to be one of the Hounds of a Hash Pack (a drinking club with a running problem). If my mates could see me now. My legs function in separate ways...one can almost take real steps, while the other swings outward and forward from the hip. I focus on today, just as you noted. If I can set my walker aside (necessary to ambulate), and take 5 to 10 steps across the carpet, and return without falling, it's a successful day.

    Not long ago, I read an article that implied / inferred that the difference between Can't and Cannot was attitude. Can't is the negative approach to inability to accomplish a desire. Cannot is the positive acknowledgement that the desire is unable to be accomplished. I will continue to monitor all I can about PPMS, praying for a cure. I long for the day when my grandchildren shout out, "c'mon GrandPa, let's play soccer (or Kick the can). Yes, I'm an old geezer, a '56 model. I really appreciate this site and the variety of information noted.

    Take care and have a good weekend.

  • Like the "can't vs cannot" ZoomJoeT. Have never heard that before. I hope you get to chase those grandkids too. 💕

  • ZoomJoeT As far as letting go. My meaning is the negative things, The what ifs and the could have beens. Being mad that the diagnosis was missed for so long causing me to be in this position. Instead of having earlier treatment to hold it off.

    I treasure each and every memory of fishing with my kids. Fishing alone. A cigar and good bourbon by the fire pit with buddies. Red Sox White Sox games. (in case you are wondering I am a Red Sox fan. Born outside of Boston. Living outside of Chicago. So many countless things that I will never ever forget! That I treasure and make me the man I am. As gar as running. I have a sticker my daughter purchased for me on fathers day. It says 0.0 I don't run! Ha!

  • @rlh1974 I was diagnosed with PPMS 2 years ago. The MS was discovered sort of by accident. I had been seeing a neuro. for Essential Tremor and it got really bad really quickly so he decided to do a brain MRI and there were some white spots! He thought they might be something else and I had LOTS of other testing done, but PPMS was the final diagnosis. Now I am looking at Ocrevus, but we would like an MRI first. The problem is, I had Deep Brain Stimulation surgery for my tremor 1 and 1/2 years ago and now can only have 1 certain type of MRI, and that type is not done locally so my MS clinic is searching for a place to do the MRI so I can hopefully get started on the new med.

  • Bravery207, you have certainly been through it, now I understand your forum name. You are brave to have undergone such surgery, I hope and pray that it worked. Let us know when they find a place that can do the MRI, praying it's close by and also that you can start on the new med. Allen5280 has had instant good results on it, let's hope and pray that everyone that starts it has the same result. Blessings Jimeka 🌈 🦋

  • I was RRMS most of my life. Sometime in early 2000 I moved into SPMS and non of the DMDs worked for me. so finally about 15 months ago I found a really good neuro who put me on rituxan therapy [rituxan multiple sclerosis]. It is a chemo drug but used off label for MS. It has show quite helpful for the more progressive forms of MS. I go in for an infusion every six months for about 5-8 hours. It took about a year to notice the wonderful effects of it therapy. It has absolutely turned my life around. There is no DMD treatment for the progressive forms of MS except this one. However, there has been much progress for SPMS, and recently a FDA approval of Ocrevus which I believe benifits PPMS. More later, PM me if you like.

  • Ms-Indestructible I look forward to talking with you. I am having an awful awful day. I will PM you later. Thanks for reaching out! I need friend that have info and understand.

    Thanks so much! ;)

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