Last reply 1 month ago
Falling, my body just drops no warning?

Love that ms nurse says oh I respond to emails faster… Last time I got no response at all. This time well I’m 4days in not holding much luck.
Guess I’ll phone tomorrow and see.

Legs been giving out multiple times a day for almost three weeks now. Plenty of bruises have been collected and pulled muscles.
I did a trial yesterday and didn’t take a dose of baclofen… I regret my decisions, now I’m in more pain/discomfort in my legs aaaaannnd I’m still falling. gotta love that.

I swear I feel like I’m causing it to happen cause I get about half a second of “oh I’m going” as I drop. Feel a bit bonkers right now thanks to it.

– a lot of thinking going on right now about wtf we’re gonna do. I’m trying to sit on my rollator more so I reduce my risk of Keeling over. My anxiety is taking a bit of a hit to say the least.

There’s a lot going on with hubby wants to go hiking…and that’s a whole ball game thanks to me using a wheelchair. He’s worried I’m falling and I’m gonna do myself real damage and ahhh!

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@elliesmith I feel ya hun. People judge others too much. I deal with self confidence issues as I have all my life, so I see people looking at me funny all the time. I have had RRMS for 25years now. I feel so isolated all the time. I don’t go anywhere, not even to the campground pool. I no energy, ever. I have been dealing with the same things, among others. My stress and anxiety levels have been rising a lot also. I hate going to the drs in general, but since all this covid mess I have had to keep rescheduling. I have been in so much pain that I have been staying in bed most all of the time and I hate it too. I don’t have anything for pain so I messaged my drs and they called me in some hydrocodone, but my pharmacy wouldn’t let me have it bc they said that they sent a prior authorization to my dr but they never got it back so my insurance wouldn’t cover it and I couldn’t get it bc living on SSI, which isn’t much, and paying my lot rent, power and internet, I stay in the hole. Hydrocodone doesn’t do much for me as I have a low tolerance for pain and a high tolerance to meds but at least it would b something. And around and around we go. I have to b at the hospital at 6:30am for an MRI w/Anesthesia bc I couldn’t do it anymore. I went to do a few weeks ago and my pain levels were so high that I got nauseated and had to quit, after about 10 mins. Didn’t even get to start it. Anyways, hang in there and know that ur not alone dear. I know that doesn’t help. Here for u.

1 month ago

Are these new issues for you or worsening issues? Do you have an active lesion, have you had an MRI to check? Whenever I have a new symptom for more than 24 hours I am to call in to my Neuro and he gets me in an MRI quickly to see if I should get some steroids to shut down the inflammation. It sounds like you are trying but need to have a way to escalate this. Others in your area should have advice on what your next recourse is-

Anything that affects my ability to walk, see or think is taken very seriously by my Neuro and immediate action is taken. If you are accruing lesions or worsening on this treatment path I would think changing to another DMT would also be considered. Not sure if you have checked out Dr Boster’s You Tube channel but a point he consistently makes is that if we thought of our DMTs the way you do birth control, wouldn’t you consider a different one if you kept getting pregnant ;-0 Good point- there are multiple options now that each are a bit different and if one isn’t working, well, the discussion should happen if it is still the right one for you. I stayed on Copaxone too long even once there were more options available so I wish I would have hear this advice then 😉

If you don’t get action out of your nurse or Dr can you escalate to a higher person at that clinic or would the MS Society give you any ideas? I know that I can also call resources at my DMTs contact line (I’m on Ocrevus now) if I am having symptoms to report or address…I’d keep calling up the chain until it is addressed…we need to be our strongest advocate…keep pushing 😉 others in your area will also likely have more ides- Good luck!

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