Hello everyone I hope and pray y'all are making it ok. I would say doing well but... well y'all know. I hate it when I am having the worst day I may have had in a month,didn't shave for several weeks cause don't trust myself with a razor or scissors close to my face, knowing I look and feel like a pile of 💩 and someone says " your looking good". I wanna say Nanna Nanna poo poo, liar liar pants on fire! LOL. Anyhow.... I saw my specialist on Thursday at OU Medical Center. It went very well. The past week even with 100° + heat indices, I am doing fairly well. Have not had to use my cooling vest once since may. I am doing very well with Ocrevus. I am feeling better other than daily migraines up until Thursday. My doctor diagnosed my migraines werein fact withdraw symptoms from prolonged use of Excedrin. Who would have thought it. I didn't even know that was even possible. So he put me on Neproxin Dr/EC twice daily for two weeks then as needed for pain. It is a weak pain reliever. Guess what else? It's enough to handle my pain levels almost entirely. I am feeling pretty good all in all. Still have some weakness but it's getting better. Still addressing poor sleep patterns hopefully with some better rest I will start regaining some strength. My spasticity has been greatly reduced, my neuropathy at times is almost non existiant. If my feet get hot I can start to feel it coming on, but for the most part, my feet don't feel like their on fire and being stabbed by thousands of needles! I am extatic about how I am doing. I am awaiting my next infusion date for early November. We discussed a game plan for therapy and such to try and get me up and going again. Awaiting news on some finincial support cause medicare doesent cover much when your on a disability level income (copays and deductibles). I have got to the point where I have exausted all my own resources so now they will help more. I have applied and have been approved for welfare support from my state to get some more help so I can get the much needed PT to try and start an upward trend on my physical weakness and maybe even get some of my life back. I am so excited. It's like I have been handed a new lease on life. My doctor is happy and I am happy, so all the negatives that have been floating around the whole Ocrevus deals.... for me.... the risks are defiantly worth the rewards. My life, over the last 7 years have been a downward plummet. That death spiral I have been in has been halted and I am looking up and the sky is so beautiful. I can see the light at the end of the tunnel. I have been so very depressed for so very long and it's beautiful to have hope and a vision of a possible life again. I have along road ahead of me but I am looking forward to the challenge of rebuilding my life. I want to thank everyone here whom have been so very supportive and uplifting. For those of you whom don't know about me I had my first half of the first infusion on May 4th and the second on May 18. So I am just about to the 2 month mark of my second half of my first dose. Y'all will be in my thoughts and prayers as always.
God bless
Allen
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Allen5280
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Allen5280 praise God. Answer to prayer. I am so excited with you. I hope and pray that it will continue and you get back to a more normal kind of life. Hugs, blessings Jimeka 🦋 🌈 🤗 🙏 🍫
Allen5280 , sometimes I just don't have enough exclamation points!! Wow!! I'm thrilled for you to have these great things happening. I thank God you are seeing such remarkable improvement.
Allen5280 Your upbeat description of how you feel, physically and emotionally, is reassuring. By sharing so openly and honestly (as you always have) you demonstrate what it takes to deal with MS. I recall the time you wrote about falling down the steps from your front door, and contrast that with this post and just want to cheer you on! What a model you provide!! Applause, applause.
Allen5280 , what an uplifting and hopeful post. I can't put into words how happy I am for you. Thank you for sharing your story. It will encourage so many others here. My prayer is that you will continue to be strengthened and soar on those wings of eagles...💕
Thank you Allen! This is the kind of feedback I was looking for when I joined this group. It sounds like a very positive report. Certainly big check mark on the YES side. I'll be following your posts to see what happens between now and September.
I don't see this computer every day, just when I am feeling well enough to play and my mind is cooperating. So thank you administrators for calling my attention to this post!
Allen5280 - Woohoo! I am beyond thrilled to hear your very encouraging report and SO very happy for you. To experience the improvements you've noted this soon and in the context of PPMS is huge. Congratulations and please keep us posted. If I could still do handsprings, I would!
dianekjs I have not received a DX on my MS. In the words of my neuro " I don't have to give you a DX yet, so I am not going to" For "I don't wish to limit you on treatment options. You have a very aggressive form of Mutiple Sclerosis and I want you to have every shot possible at trying to stop or slow the progression". So that being said it's not RRMS. From what I have read and learned I probably would have been a PRMS if that wasn't done away with. Now they list the former into PPMS with periods of active or inactive. I do know I have had periods of slow progression coupled with extremely volatile progression. I am feeling with an atypical case where my MS has permanently damaged 8mm out of about 9mm of my brainstem at the bottom of my medulla. Front side of that is muscle function and the back side of that area is respatory function. My specialist has said to me "Well Allen, I believe in miracles. You shouldn't be walking or talking at all". I will take my blessings! 😁 I am very excited about where things are going so far and hope and pray there are more people that receive much needed benefits from Ocrevus and the big man upstairs! Y'all are and always will be in my thoughts and prayers.
The other part of that all is kinda scary for me. The other side of that coin. I may not have a DX because my case is atypical and I may not fit into any. That thought has kept me up at night a few times.
Allen5280 , thanks for the clarification, I thought I remembered that you were PPMS. My diagnosis is also somewhat unclear, but my neurologist finally put down PPMS since he seems to be leaning that way and it simplified insurance approval. I have "atypical" typed throughout my bulging medical files, so I can empathize with the difficulty of dealing with the uncertainty. Regardless of what they label your form of MS, it's been aggressive and you're responding to Ocrevus and that's what matters. Yay!!
I am so happy for you I am glad 😁 to hear you are doing so well with your treatments. You are giving me appositive attitude for this medicine. I have a couple of questions are you able to drive your self to get your treatments, how long are the treatments and it sounds like you are not having any reactions to the treatments. How far apart are the treatments.
I know how many times can I fit the word treatment in a sentence. I hope your weather changes the humidity is crazy here in New England, USA. We have had 90+*F here I know it not 100*F I am not saying ours is worse than your.
Oh and I got a ride to my first infusion because I wasn't sure how I was going to do after and I am glad I did. I got another for the sev9nf as wrll. I'd was several cause after my sec9nd infusion before I even thought about driving and the two weeks following it was just times of necessity. I felt kinda like I had the flu without being sick. Then you throw the normal MS exhaustion on top of it and I didn't feel up to much at all. I sloely improved each day and even with the heat we are having, I am tolerating it better than I did last year. Then again I don't go outside much. In these temps the coolest I can keep my RV is about 85 so it weighs me down still. I do have the bedroom kept at about 72 so I have a cool some. It's smaller and stays cooler from the shade from a tree.
I had posted about my infusion reactions in may when I got them. I did have some vertigo during my infusions and for a few days after as well. I also had about tow weeks after my second half where I was wiped completly out however after that began passing it was all good. I had a Steroid and benadryl through my iv prior my infusion and they were quite strong. Knocked me out for about an hour so that was good with me. I live in Duncan, Oklahoma and it's always hot this time of year. 😳
Allen5280 I want to thank you for giving me that information I won't drive myself because where I will be driving is into Boston there crazy drivers on a good day. Thanks again
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Neuro visit went well!
Ocrevus update.
