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nutshell88
6 days ago

i wasnt aware i have it first 3 years i git treated after couldnt tolerate
ii stopped treatments 8yrs no much different untill now i started treatment this year


itsmewithms
6 days ago

Interesting that you have RRMS for 45 years and it hasn’t progressed to SPMS and you haven’t had any DMTs through that entire period? To me that is pretty amazing but there isn’t enough in your profile to understand how you are doing.

I went out to the Canada MS Society webpage and like it better than the US one 😉 I may surf there for awhile. They may have ideas for you and I see resources and meetings that may be in yous area? when I put “Canada MS Advocates” into Google I get some hits…maybe something like this group- have you tried” https://mssociety.ca/support-services/programs-and-services/203/advocacy

Looking at the range of issues brought up by people in this forum and covered in the various publications I have been surfing I have begun to make new requests of my Neuro and he has obliged.

At this point my MS is a fact and won’t go away. I will be moving from Rebif to Ocrevus as it is approved for SPMS which I am transitioning to. I have symptoms affecting my gait and balance. The issues especially affect my right leg. I have spastacity and spasms primarily.

So I have requested- and been granted-
PT sessions to work on strength and balance. Go twice weekly to a local PT for sessions and work out at least once a day at home on the exercises he prescribes.
Sleep drugs (Ambien) as lack of sleep worsens MS so I told my Neuro it was in his realm to help me manage symptoms. Not crazy about this one and actually find Tylenol PM to work as well and it is over the counter here.
Gralise (initially given gabapentin) to help with spasms and spastacity. I know there are other drugs specific for Spastacity but am working with just this one initially
Ocrevus-approved to start in two weeks…fingers crossed
AFO- custom orthodics in my shoes and in addition a brace that helps my foot stay level as it moves forward to prevent stumbles/falls

Depending on how Ocrevus goes I may also ask for a FES device to help with foot drop. There are also TENS and electrical muscle stimulation that people say helps. Check out Terry Wahl and what she has done and promotes. I’m not ready for the whole Wahl protocol 😉 but am looking at what she has done like Novantrone, the electrical stimulation and the diet changes.


vixen
3 days ago

Hello @jeanm-sweet, how often to you get monitored, or see a neuro? I can’t imagine age being a barrier to having treatments or medication. For people being diagnosed nowadays, life is very different. But that doesn’t mean you don’t deserve the same level of attention and care. 😊


jeanm-sweet
3 days ago

I see the neuro every 3-6 months.


itsmewithms
3 days ago

As I said above I was taking Rebif for the last 4 years after taking Copaxone for 11 years since I was diagnosed 15 years ago. I will be moving to Ocrevus in a week and a half as it seems I am moving to SPMS with a general decline although I have no new lesions or old active lesions.

There are currently studies going on to see if it is better to stop taking Rebif after the age of 55 if you haven’t had any new lesions in at least 5 years. I would expect this comes up from the insurer’s side of things as the drug is expensive and may not be necessary. The patient may also question if they really need to inject themselves 3 times a week.

Don’t think that study is wrapped up yet and have mixed feelings about it. Afterall, what if it is offering some protection? and on the other hand why am I sticking myself with a needle and spending so much money on this if it isn’t really needed? Keeping an eye on that although I am moving off it at around the same time…so something yet more expensive!!

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