I was told several years ago that I had primary progressive Ms. Anything I need to know..
Any medications I should be on.?
Because I really think my Drs and Neurologist don't have a clue about MS.
Ìm on nothing but vitamin D Anti depressants and co- codamol. I am able to stand for now with help and the use of equipment but not walking. Have home help for an hour a day but otherwise feel like I've been forgotten by the medical profession. Of course they'll blame Covid!
Any feedback? Anyone?
Christine
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Totallysick
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Sorry...I know that wasn't much help. I just get worked up when I hear stories like yours.😥 Keep after them until you are satisfied with their answers. Best of luck to you. Sending prayers & love. 🙏💖
Definitely time for a new doc. Preferably with one affiliated with a teaching college. My first neuro was a total dud. 2 appts and that was it. Being in CA, I was able to get a doc with the University of CA healthcare system. Very happy with their services. Best to you, and do a little research on MSAA and the net.
I'm going to agree here! When I see posts like this, I am reminded how lucky I was, 25 years ago. I was steered toward the University of New Mexico Hospital, amd my first neurologist was actually the FOUNDER of UNMH's MS clinic! So, YES! Look into a teaching hospital, one conneted with a university!
Let us be honest here, brutally honest. I have Relapsing-Remitting so I am far from an expert on PPms. As I understand there is no medicine currently available for PPms. I would think that physical therapy\Activity is the best that you can do. Find some way to stay physically able to do things, the more the better. Either way, perhaps your doctors have put you in the to hard basket as there is very little that they can currently do for you. Make that nothing.My commiserations for you and the best of luck
as I said I am NOT an expert on ppms, sorry for replying I am sure in this group there are people who know far more on the subject than me. Again my apoligies
Midgey_Midge - as you are not living "down under" but live in the US of A you wouldn't have heard that Ocrevus was approved in Australia only a couple of months after it was approved in the USA i.e. back in mid-2017
Ocrevus is not covered for funding in Australia by their Pharmaceutical Benefits Scheme for PPMS but is it for RRMS.
In any case, information about Ocrevus in relation to both the USA and Aus is irrelevant for Totallysick because according to her user profile she is in the UK.
I was attempting to make Royce feel better about not knowing about its effectiveness on PPMS as he rarely comments on posts. I wanted him to feel comfortable knowing its ok to not be perfect in all that he says.
According to a post Royce put up a few hours ago he's just had his first Pfizer COVID vaccine shot, so he certainly isn't living "down under" as the Australian vaccination program won't be starting for several more weeks, and then it will be frontline workers and aged care residents who get it first. Others won't be getting their jabs for at least another couple of months or longer
As Royce stated " we need to be brutally honest ".... That being said my mom converted to PPmss, after having RRMS. There are no drugs to help this, so therefore you should stay as ACTIVE as possible- body & mind - start 📚 or whatever pleasures you 💓😊💓Lisa💕🇷🇺🇷🇺
I also have PPMS and have noticed the doctors involved are hesitant to answer questions about what will or will not work. It is frustrating to say the least. I've left any wanted research on my own account, however I have found that my best chance of getting an answer is to ask a direct,educated question and tell them I won't hold them accountable. If you find a doctor or a method that works ,please share. I think I would like to explore this subject further, WE do need to make plans for the future and not knowing can be worse than knowing.
Yes Okrevus is the only PPMS drug available. They also use Okrevus on RRMS patients. I’ve been on Okrevus through 8 infusions. It will not
make you better, but it can stabilize you. I’ve had no new lesions in over 3 years! That’s a miracle. I like most everyone who has commented will agree...you MUST get a neurologist you believe in. Yes they have knowledge we don’t have, but we employ them. Don’t ever forget that fact. I’m very fortunate I have a fantastic neurologist that specializes in MS. What he’s doing for me is helping me tremendously.
Your post sounds very similar to my own; Ocrevus from the DX and now that I'm sliding into SPMS (my Neuro and I believe) are switching to a once a month, self administered injection that the Neuro seemed very excited about. Wish you luck with the journey...
As you search for the right neurologist for you for your PPMS, I highly recommend watching Dr. Boster on YouTube. He is a fantastic MS resource. He is a neurologist in Columbus, OH and is passionate regarding MS. Many blessings to you.
It's difficult to hear that yet another one of us feels abandoned by her doctors. Unfortunately, it's not uncommon. I know how you are suffering. If at all possible, do consider seeking out a supportive neurologist (at least). MSAA and NMSS both can provide names of doctors who have MS specialty and experience. University hospitals often have MS centers. There are medications that may help alleviate some symptoms and make your life easier, but depending on your age, physicians may be reluctant to prescribe them; many medications have not been trialed on seniors because they are less effective on aging people. I wish you better days and more help.
I'm going to reference jimeka and AliB here. They are in the UK as others may also be and can give you their perspectives, either here or via the Chat feature (which is less public). Best wishes!
Hi Totallysick, I too have PPMS. Was diagnosed about 9 years ago.,I go to a neurologist who specializes in MS and I love him. He is up to date on newest treatment and wants a better quality of life for me. I am on Ampyra ( helps with walking) Gabapentin for muscle spasms. Ropinol for restless legs and leg spasms and Ocrevus ( DMT) I do PT and am fairly active. Walking in pool is best. I wear 2 leg braces and use a walker, but at least I can still walk. As was mentioned earlier in other posts, the most important thing is to find a Dr you like. I would suggest a specialist in MS. Good Luck and God Bless
Hi Totallysick like everyone says, find a MS specialist!! Call MSAA Toll Free (800) 532-7667 They can help you! And you can take Ocruvus, which is an infusion that you get every 6mos. 🤗💕🌠
Ocrevus is approved for PPMS. If it doesnt do anything for uour current symptoms it can help keep YOUR MS from progressing. There isn't a miracle drug but for me it has 6been pretty close. I only have RRMS. Find a new nero that actually knows about MS.
Hi, I have PPMS and the meds I take are Ocrevus (twice a year), Gabapentin (for nerve pain) and tizanidine for muscle spasms. And physical therapy. I can move but my balance is gone. I have to touch everything to walk.
What happened five years ago when the neurologist told you that you might have MS? Did you have any further MRIs after that one five years ago that found a possible lesion, or have any other MS related diagnostic tests? What happened with the MS nurse you were assigned to?
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Sick of feeling sad and helpless
If you are sick, stay home...pls
Very confused and very sick
we better not get sick
