I will be getting a recheck of my MS, how Tecfidera is working for me, most likely blood work. Also going to talk to my Neuro about how I have been having more frequent, painful spasms in both legs now, not just the left leg. My frequent headaches, dizzy laying on my left side, and the weight-loss after stopping Copaxone and starting Tecfidera. Will of course I will update everyone after my appointment.
Jessie
p.s. There was a 'plus side' to my back injury a few months ago (who would have thought lol).....urine hesitancy is doing better than it has in years. It is still there to get started sometimes but not the whole time that I'm trying to pee!! Somewhat feel normal in that respect
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bxrmom
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Jessie, I wonder if you are in an exacerbation. I had spasticity that moved from one leg, to two legs and one arm. That plus numbness and my neuro put me on solumedrol and us switching from me from Gilenya to Ocrevus ( which I haven't started yet). I also had a significant weight loss when I stopped Copaxone. I thought it was from the Gilenya.
Iona60 I never even thought of an exacerbation as the spams recently started to get worse. Just glad my appointment is next Thursday so I can talk to my neuro about possible exacerbation. I had mentioned to the neurosurgeon about my weightloss after switching meds he didn't think that's what it was from. But who knows. My weight has pretty much held steady now after the 25 lb loss. Will be interesting to see at my appointment.
I have heck of a time with urinary hesitancy to. I had prostate surgery after catching for 6 months and was doing great until MS came into my life. But I can go without a catheter so I’m not complaining.
Hope all goes well at your neuro appt. I didn't think that I was in an exacerbation, but the solumedrol really helped the spasticity for a week. It's starting to come back now. I think it is because he took me off Gilenya and I'm waiting for Ocrevus.
I wish you the best of luck! So frustrating trying to play detective and identifying where are issues are originating from. I'm always surprised and discouraged when they diagnose a relapse😕😒
bxrmom When I was on Tecfidera, cognitively I felt much sharper than I ever felt on Copaxone. However, my legs weren't working and sometimes I needed 2 canes. I was switched to Tysabri and gave up the canes and unfortunately the sharp cognition too. With this relapse I'm in right now, I'm wondering what will happen next. I know my neurologist is switching a lot of his Tysabri patients to ocrevus. Good luck with your appointment. Advocate for yourself! None of these DMTs are 100%. I was reminded of that yesterday when my daughter asked the doc why I would relapse on Tysabri. Hope you get great news!!
Thanks Juleigh21 . Sorry you had to have canes when on the Tecdidera...always a plus and negative side to everything I guess
I always have to be my own advocate since starting this MS journey as everyone is always 'poor you', you should file for disability since you have the diagnosis, blah, blah, blah. 2 years later I was forced to file because of a bad relapse.
@bxrmom I have been using Copaxone ever since I was Dx'ed in 2008 and aside from some minor itching at the injection site I have had no issues. Luck of the draw I suppose.
WayneH143 I started with Copaxone in 2006 after being dx'ed. Then went to the 3 times a week dose when it came out (my neuro at the time wasn't even aware it was out). When the pill form of meds started coming out I switched to Tecfidera because it had the least side effects that I thought I could tolerate. I switched to the pill form because I had welts that didn't want to go down like they used to when I first started.
I think I settled the welts issue by adjusting the needle depth. My mother-in-law had diabetes and I got so used to her 'shooting up' all the time, the thought never bothered me much. Besides, I do it in the morning, at home and not every time I'm eating out!
i don't know your history but if dmds are failing you maybe look into hsct? when you talk about your pain it reminds me of when i was 34 and got really bad, quickly, with my legs so spastic i ended up in a nursing home. as a final option i was treated off study at northwesterm in chicago.
nes78 dmcds are not really 'failing'. I think I may need an adjustment to either a higher dose of baclofen for my spams or maybe something added to what I take already (I also take zanaflex which a couple of times I have either missed adding to weekly box (or dropped it when getting the meds out and didn't take it) and could feel it when I had missed it).
i hope that works for you! baclofen never did anything for me and i've had a history of being on chemo or immunosuppresants in combination w. dmds because my ms has been so strange from the beginning. i forget that there are plenty of people who are fine with what's available and it works for them
I take 18mgs of tizanidine zanaflex a day. I still have constant paroximal spasms all day night every day but before that I was getting contracture that left me in tears dying in pain. My nuero has no suggestions on what to do or any way to stop it. I was on some for years when contractures started so the zanaflex at least helps in that regard but I wish there was some way to stop the constant spacticity paroximal spasms it's exhausting not having a break ever for more than a few seconds. Good luck
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Its that time again! My 6 month mark on Ocrevus.
💐🌸🌺Have A Gr8 Week! Neuro. F/U..
Ocrevus +10 months, new blood test, neuro visit tomorrow
6 yrs ago this month
