Had appointment today and doc feels I have moved from rrms to ppms. I definitely know things are worse! But I've been trying to stay positive. And want to be hopeful that things change. I joke around with this MS everyday! The good thing is... I'm on the one and only drug that is suppose to be for ppms (Ocrevus). I go back 4/18 & 4/20 for MRI's to see if anything show on MRI's. Doc will go over results 4/24.
How do I stay positive? It's a blessing to wake up every morning!!
It is blessing, a gift to be alive each morning. And embrace each second or hour, moment or experience as the day progresses. And be thankful for all the blessings that has been bestowed on us. Today, I was able to play oboe with a flautist friend. She surprised me with the most beautiful gift, a small light weight quilt that she made for me(with my favorite colors!). We both needed a nap before we could play any duets, and she doesn’t even have MS.😀 I really needed that nap plus one when we were finished. Yes my MS is progressing and she understood. Those are blessings and I thank God for loving me.
:)That's really sweet!! Most definitely blessings!!
It’s been a while for me. I was extremely active about 1 year ago or so...been dealing with the same news from my neuro. I haven’t gotten better (my positive way of saying PPMS))...My RRMS has transitioned too. My story is entirely similar to yours, I 100% am on the same journey! I have great news, girl! I had my 6 month follow up MRI, and saw my Neuro for my results last month. NO NEW LESIONS! At this point, I’m dealing with the woes that have begun to haunt me from older lesions. I walk with a stick (Rome), a walker (when I need it), and use a scooter (prn). Accepting the new way things are has been a real mental challenge...depression is a booger. I get out sometimes, it’s not all bad, I’m extremely blessed. God is good.
Yeah sure we may stare off and have that whoa it's me look! But we are entitled. It's a lot to digest sometime. I had no questions at the time when neuro told me that yesterday. We must keep our head up and keep moving. Insurance company decided 2 weeks ago that they would skip over scooter for me and give me a power wheel chair. That i will use as needed. At first I was dang! They're negative! They don't believe i will get better! Now after that news! I say they are being smart! Stay strong kj9681.
I often wonder about what it is that i’lll have to face. I just had a major surgery on my right foot yesterday. Dr. Proto fused the bones in all 5 of my toes. You see, they had spasmed and I was walking on the equivalent of my foot knuckles. Very uncomfortable. In addition, I also have foot drop on the same foot. I’m like, “damn”... At the beginning and end of the day, I fight!! If I have to tuck and roll, I will get up and limp, or roll out! I’m moving to Tx so I can be near my children. I’ve had them alone (single mom) since 2007 however, I’ve reached a point where my ex is wanting to take the girls if I chose to keep any of them in VA (where we live now). I admit, I need help...assistance. I’ll be keeping the twins, and he’ll be taking the oldest. 3 girls. I wonder if i’ll ever place my hands on another patient. 🤔. I’m rambling. I needed to vent. Thanks for listening. ❤️
You are definitely strong! That foot drop on top of surgery. And you are managing a move! Assistance is definitely needed with this condition. With God all things are possible! It may take some adjustments to make things go as plan. Work isn't a option for me. I accept the new normal of not being able too. And focus with what i can do. Sometimes doing too many adjustments becomes stressful in itself. And we all know to try and stay away from it. I do reminisce about work.
I’m sorry that your MS seems to be progressing, but I love your attitude. You’re in my prayers.
Thank you!
Also, I hope Ocrevus is fantastic for you so you will have even more blessings and good/fond memories tomorrow and in the future!❤️
Diva1976, it's Fancy1959. As I understand it, especially since I started with relapsing and remitting Ms when I was diagnosed you cannot go from relaxing and remitting MS to Primary Progressive MS. You would have gone from Relapsing and Remitting MS to Secondary Progressive MS. Primary progressive MS is represented by the disease where your disability continues to grow steadily from the day of diagnosis on . There are no phases where disease has any long stretches of remission or remittance. With Primary Progressive MS disability does not have major phases of remittance, it just continues to grow at a slow but steady pace. My MS moved into the Secondary Progressive MS stage about 2 years ago and my disability continue to grow slowly but steadily. I started ocrevus about six months ago and I had earlier this month the first MRI I've had in several years where I showed no disability progression. In other words I had no active lesions or no new lesions show that showed up on the MRI! To me that was miraculous since it was the first year I have been stable in my MRI in the past two to three years. Hooray! Support our researchers and raise money for research because that is our best and only hope we have right now. Remember is always together we are stronger! Fancy.
Hooray yes for great MRI’s! Sometimes I wish my MRI’s would correspond with how my body feel. But I realize too that damage has already been done from what led to diagnosis. The way the doc explained the diagnosis is that they want to assume rrms for everyone. He said there isn’t anything that signifies what type we have for sure. It’s their expertise. I agree with the order. And i’m assuming it was missed. The part I’m confused with is always majority of time feeling I am relapsing. And when I am left with a symptom that has worsened. And trying to figure if it hasn’t corrected itself. Does that mean I’m progressing? Does it mean it will eventually correct itself? That’s where I’m hoping Ocrevus kicks in at. I will have more questions for doc at end of month.
Diva, even when I relapsed and remit I always noticed that when I'm in remittance or a stage of remission my disability never gets back to the level of use I had prior to the relapse. My worst relapses were always induced by illness. Seriously if I spiked a fever in 20 minutes I go from feeling normal to bouncing off the walls almost unable to navigate to get to the bathroom. Literally sometimes I became a lump of useless flesh unable to pick myself up or move to a sofa or chair. You talk about feeling bad when you can't make it onto a piece of furniture you just kind of collapse down on the floor and you are stuck there until someone comes in to help you. These relapses would usually last as long as I was seriously ill maybe two to three days and then I would start to come back to normal but again I never achieved the same level of normalcy I had prior to the relapse. Yuck.....
It’s sad! For me in the beginning it seem like after steroids I would go back to my new normal. Not that it was good but u learn to accept. The past year just seems like I just been dwindling down but I still bounce up like i’m good! After steroids now is a bit different. But i’m Here! I’m glad to hear your insight fancy1959 to know you too experience the same where it’s different after relapse. This is why I love this site! We all relate in some way!
@diva1976 I didn't know u could go from RR to PPMS. Thought it was RR to SPMS? Sorry to hear this but I'm in that club too.
Good morning
I understand what you are going through.
Good luck and try to stay happy for each day!
Good morning! Thank you! Good luck to u too!
I have gone to SPMS and the last 2 years the most deterioration. I had to have right foot surgery because I was walking with a completely broken big toe. I don’t know when I broke it or how. I had to get a big bunion removed and fused the big toe to my foot. I will get nerve pain where they fused my toe and it didn’t stop spasms in toes or foot. Suffer horribly from spasms from neck to toes, both sides of my body now. It use to be just left side and para spinal muscles. You can get spasms in some places that seem impossible. But do exercises in bed while your foot heals. Keep moving some how. I found an exercise routine on the internet.
God bless and keep you and your family safe. If it isn’t the disease, it’s the ramifications of having it.❤️
Not to contradict your doctor, from my understanding it is not possible to move from RRMS to PPMS. more likely you were PPMS from the beginning or you have moved from RRMS to SPMS. Hopefully the later is true. Most all the time people are dx with RRMS just so the doctors can start you on some type of treatment. Either way for those of us with progressive forms of MS, it is a major life shift. And a very difficult one at that. I have included a link below that I found interesting for you to look at if you are interested to know more. The second link I included was the search site I used that also has many other interesting links.
"More than half of the time, RRMS eventually transforms into secondary progressive MS, which resembles PPMS in that patients’ neurological function relentlessly declines." msdiscovery.org/news/new_fi...
Search Link duckduckgo.com/?q=rrms+to+p...
To your question, "How to stay positive?" Trying to stay simple. Emotions and facts are very different. We feel through emotions, facts are understood by the mind. Fear, the unknown, etc, are feeling based. You trust in your belief in God and that become fact. To know and believe everything will be alright is supported in your belief in God. This is the fact you hold onto. So in those moments that your feelings take hold and scare the "Bee Gibbers" out of you, you turn your thoughts to the facts. At least that is how I stay positive.
Just know you have plenty of people here who understand, this is a safe place to vent, or to ask for prayers and support. This too helps those moments of despair.
I spent most of my life with RRMS and went undiagnosed till I moved into SPMS when I was first dx with MS. As with you I was dx with RRMS. When I quired my doctor that I thought I was in SPMS, they agreed but said that they dx me with RRMS so they could help me.
Being positive is a choice not a feeling, though you feel better when you are positive in thought.
At times I get long winded, but know your people are here. We listen and understand. My prayers and thoughts are with you. ~terry
Great articles! I've been reading about ppms more since being told that Tuesday. Concluding I was maybe at at spms going to ppms. Because i haven't found any article where you skip over. In terms of symptoms. It explains my struggle to walk. And how it continues to get worst. The major difference between rrms and ppms is medication. I'm limited due to JCV level. The MRI's between rrms and ppms are pretty similar. I know its in the works for dx of MS to be more defined far as what level we are at. Because as of now they list most of at rrms when that may not be the case. And you r right, having faith in God to overcome hurdles we go through.
Just a little correction to understand. RRMS, SPMS, PRMS and PPMS are not levels. They are definitions of the "type" of MS. Doctors are reluctant to specify the type of MS or will dx at RRMS due to the ability to help their patients.
MS is very difficult to dx and doctors have a hard time admitting they are wrong because patients will lose trust in the doctor. So your doctor saying you "moved" from RRMS to PPMS was not a progression but was a correction, I believe. Meaning you were at PPMS from the beginning and not RRMS. There is only one "movement". Approx 15% of people dx with RRMS will progress to then be dx with SPMS and this percentage of 15 is also changing as MS is being better understood. As new medications are being approved by the FDA and doctors are learning about them, doctors are now "able" to dx MS in a more "accurate" way. Our health care system is to blame as doctors are limited to the help they can provide by the dx they give. With MS it is very complicated. Part of what the article I provided was saying was how difficult it is for doctors to figure out if a patient has RRMS or PPMS.
So we must understand what the system is and what doctors are trying to do. MS is a frightening disease for many when first dx a doctor wants to help and until now the only help came by the dx of RRMS. As new medications are being developed for the different types of MS and doctors are learning about them, the dx are becoming more "accurate" because treatment options are changing.
It is very complicated and I could go on, but even I don't understand it enough. Already the changes are taking place. The above definitions [RRMS, SPMS, PRMS, PPMS] are being changed to CIS, SPMS, and PPMS [check the definitions as I might be wrong with those 3 I just mentioned].
The Great News is within MS the system and information is changing. New drugs are being developed for all the different types of MS and more research about MS is happening. It is not easy to stay "on top" of these changes, as a "victim" of MS and dealing with the disease symptoms, it is all very challenging, it just takes time.
I was able to have my dx changed to SPMS when my health care providers started to recognize and allow Rituxan to be a valid treatment options for SPMS even though it is not FDA approved for MS. [it is an off label use for SPMS]. While now Ocrevus is approved by the FDA for SPMS.
So things are a changing. It is Good for all of us in the MS community. ~terry
Right, you're correct not levels but type. And I recently saw CIS. It was just mind boggling to me. I guess it will be just a matter of time before doc's start using that as a type of MS. Its a lot of information out there. Have to filter through what applies and what don't. Control what we're able and don't worry about what we can't. MS is a monster in itself depending how one is affected. Things are steady changing. And we can only hope for the best going forward! And you are very informed with this disease to me MS_Indestructible. Thanks for the feedback!
You're welcome, that is what we all are here for, understanding and support [at least my thoughts]. I was dx in 2007 and it took me off work. Most of the time I became bed ridden with nothing to do but watch tv and be on the computer. I read up on MS and learned about it. But since then much has changed. I like to be informative and back my thoughts with reliable information for others to use or dig deeper on the subject matter. Often times I make suggestions or quire my doctors about meds or treatments. They like it and we sometimes get into some interesting conversations, but their times is limited by their employer. I hope my information will help you. I ran across two articles I'm reviewing now and will post soon. They are about PPMS and I think you will find them interesting. Take care and I wish you the best with your new journey into the unknown. ~terry
Thanks, you do the same!
Ocrevus for PPMS
Was DXED with PPMS
PPMS & Living my Best Life
Recently Diagnosed with RRMS
