Suggestions accepted. Only rational, please.
My Neurologist, surprisingly, doesn't re... - My MSAA Community
My Neurologist, surprisingly, doesn't recommend Ocrevus to me as he sees no active (contrast enhancing) lesions in my MRI Report.
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22 Replies
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Hi, Supremo! The neuro I have been seeing since 2017, wanted to put me on it after my appointment with him on December 6th. He was convinced that I had PPMS, after doing many tests, and reached a diagnosis of PPMS. However, he left the practice at the end of December, so I saw a new neuro at the same place. He is the director of the MS clinic where I have been going, but he isn't convinced that I have PPMS, and has referred me to a neurosurgeon, and ordered an EMG, both scheduled for February. So I'm in limbo land again, when I thought I finally had a diagnosis, and could accept and deal with it. My SSDI appeal hearing is tomorrow morning, so I'm trying to figure out what to tell the Administrative Judge, when my attorney has all my recent medical records. 😵😦
• in reply toBamfan1442
What is my takeaway here?🤔🤞
Bamfan1442, it's Fancy. Tell the administrative judge the truth about your disabilities. You have to probably have testing where it shows the extent and the across-the-board disability you're feeling if they wanted to put you in primary progressive MS. You going to the hearing dress down. Be neat but don't be stylish. If you have a walker and needed make sure you take it in and use it. If you don't have a walker borrow one quickly. It's all about perception and giving the administrative judge the perception that you actually have MS and making him understand what it entails because they don't have a clue. It is a progressive disease and today there is no cure so we all have to accept the fact and especially the administrative judge has to accept the fact that you will not be getting any better you will only be declining and having an increase in your disability. This is what you need to play upon. Be sure you let the judge know what you can no longer do. Let them know if you could work full-time you would love to do so but because of blank to blank to blank ( you fill in the blanks according to your disabilities) you are no longer able to he productive and work. Hence your need for SSDI. Don't play upon your open diagnosis just play upon the fact that you have MS and it's a degenerative disease of the central nervous system. I hope this helps. Please let me know how your hearing goes tomorrow. I'll be thinking about you all day tomorrow and wishing you well with your SSDI hearing. Fancy.
I am posting on the hearing in a few minutes, in a new post! Thank you for your response here, it was very helpful! Stay tuned......😉❤
Supremo, the beauty of ocrevus is it prevents the increase of disability and hopes to fix over long term use some of the Damage Done by your lesions and then, hence, decreases your disability. I I want you to understand you are the best advocate for your own health. If your gut tells you you want to be on ocrevus because it's one of the newest and brightest of the DMTs on the market today, listen to your instincts and pushed like crazy to be put on it. Once enhancing lesions are observed it is much harder to go back and fix what has enhanced then it is to prevent the enhancement. That is the cold stark scientific truth that you are so very fond of. I also have a question for you. Is your neurologist and MS specialist? Find someone who is up on the latest research in newest Therapies in the marketplace. Don't settle for someone who is working on outdated beliefs or misinformation. The neurologist I saw was actually one of the key neurologist to war involved in the clinical trial for ocrevus. He was essential in getting it approved and on the market so fast. He has retired since then which was a great personal loss to me. Before he left he told me not to get off of ocrevus because it was my best hope to live with less disability with MS. He was involved in all three phases of the drug trials with ocrevus so I think he probably knew and understood the DMT to a greater extent than anyone else I have ever met. I now see his younger protege in the neurology office that also is working closely with ocrevus. I hope this helps. I no it's not very scientific, but I would listen to your gut and if you want to get on Ocrevus don't stop until you do. I am glad I am on it and I am starting to see some improvement in my balance and my spasticity. Plus I've had clean MRIs for over the past year which was the first non enhancing MRIs I've had in over 5 years. Fancy.
• in reply toFancy1959
Fancy1959
My Neurologist doesn't recommend Ocrevus, to me. My MRI shows no new lesions or any kind of activities in the old lesions too. Hence he sees no point in infusion of Ocrevus, to me.
I follow my doc!
Fancy1959• in reply to
Then why in the world did you ask for suggestions if you already had your mind made up? Talk about being irrational. There are so many others in the chat room that appreciate and want different viewpoints to help consider other possibilities when dealing with their MS. Sorry to be so snappish but it's been a rough evening on this end. Fancy.
• in reply toFancy1959
I understand you Fancy1959 and your condition too.
I asked for suggestions and it doesn't mean that I take them, fully.
The suggestions have to pass through the rational filter of my brain, right?
If it can't accept, that's it. End of the story. 😊
So, if your neurologist is not recommending Ocvrevus, what course of action or treatment is he recommending to you? Is he recommending one of the other MS meds, or is he suggesting a "wait and see" approach"?
You've previously posted that you were diagnosed with PPMS and given Rebif, but after that you were told that you're now considered to be SPMS - which is a bit strange because people usually go from RRMS to SPMS, and PPMS is considered to be a different disease course (no clearly defined relapses). Did you have a lumbar puncture as one of the tests that was done when being diagnosed?
If you were PPMS why did your neuro prescribe Rebif for you when you were first diagnosed with MS, when Rebif has never been approved for PPMS, even in India.
• in reply toFrances_B
"..Rebif has never been approved for PPMS, even in India."
I didn't know this.
No lumbar puncture done to me!
My neuro hasn't responded yet on my future course of action.
I'll be posting it, definitely.
Thank you for invigorating me.👍
I have not had active lesions for more than a decade. MRIs don’t show all disease activity. Ocrevus has been a godsend for me.
• in reply toerash
🙏🤐
So, if my recent MRI showed no new lesions, and I haven't been on a DMT yet, then what other tests or procedures would show disease activity, for a diagnosis of MS? I'm getting a nerve conduction test (EMG) in March, ordered by my new Neuro. Just curious 🤔❤
Oct, neuro filament, higher potency mri
Wow, will definitely have to ask my new neuro about those tests! Thanks, Erash! ❤🙂
Neuro filament and higher potency MRI are not readily available —but likely coming soon
OCT is available and there are ongoing studies to see if it can be used in lieu of MRI (I’m in one of those studies). It can show progression but won’t identify specific lesions.
2Tesla MRI is likely best currently available but we know doesn’t show all disease activity
• in reply toerash
😎
Hrmm, what is OCT? 🤔 LOL
• in reply toBamfan1442
Sorry to crash in!
OCT is Optical Coherence Tomography
octnews.org/category/26/cli...
Bamfan1442• in reply to
Thank you, Supremo, for the info! I will go to the link and read to learn more about it! 👍☺
Optic coherence test
Like an ultrasound of the retina/optic nerve to identify nerve thinning that suggests MS progression
Take 2 minutes, no prep needed, not painful or invasive
Thank you, Erash, for the explanation! I will ask my neuro at my next appt if he thinks I should have it done! 🙂👌
