Hello! I’m Ali, recently (January) diagnosed with progressive relapsing MS. It’s been a huge learning curve to manage the slew of symptoms and my new normal. But it’s worth the fight when I’m enjoying time doing something I love. I am married to a wonderful Navy sailor and we have 2 kids. Ryan is 12 and Emily just turned 5.
I first had symptoms when in November 2016 I was suddenly paralyzed from T 11 down. 5 days in the hospital with lots of solumedrol and tests they thought transverse myelitis. Now after many MRI’s, lumbar punctures, blood tests and several relapses... progressive relapsing MS.
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alimitchell1
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Welcome to the group. This is the place for support and advice from people going through the same thing. Just wish we could all get together for different reasons.
I’m sorry about the diagnosis, but it’s great you found this group of warm and helpful people who understand so well the challenges you face. You are blessed with a supportive family and a great attitude, but it’s very helpful to vent here and ask questions. Welcome.
Thanks for the warm welcome! I started on Rituxan in December. I too have most of my lesions in my lower spinal cord which causes left foot drop, lots of left leg numbness, and my saddle area is pretty numb with crazy spasticity. I’m on baclofen and gabapentin to relieve the symptoms. It works ok, keeps me functioning.
Welcome to a wonderful group here. Really sorry for your dx. At least your doctors put you on a wonderful drug. I've been on Rituxan now for several years and loving it [if you can say that for any DMDs] but it is working well for me. I just had several MRIs done recently and was just now declared stable for the first time since 2007 when I was dx. I take 40mg/day of baclofen 20am&20pm, and 2400mgs/day of Gabapentin 1200am&1200pm.
When I was first dx I had numbness from my nipples to my toes, I still have numbness in my feet, various places on my legs and also in the "saddle area" as well. I take approx 17 meds a day, several as needed and the Rituxan. Such is the "new" norm I get to live by. Love your positive attitude, seems you'll fit in nicely. ~terry
Hi Terry. Thanks for the warm welcome. That’s awesome about being stable. Thanks for sharing your meds. That is a lot of gaba! Does it make you foggy headed? Do you still work? I take 600 at night and 300 during the day. I am a middle school teacher for 16 years but since this all started in November 2016 I have been in and out of the classroom. The gaba makes me a bit loopy. But it’s just part of the new normal.
You're welcome. I play around with the dosages of my meds and talk to my doctor about it after. I figure it is easier to ask for forgiveness than to ask for permission. I technically quit working in October 2019. But actually quit in March of 2007. I had to go back to work for a week and took 3 LOA to get to my medicare in November 2009. My Insurance requirements. For the Gabapentin I started at 300mgs @3/day and gradually had to increase to the total of 2400mgs/day @1200 2/day.
I drove school buses for approx 18 years. I was driving Cement trucks when I was forced into retirement due to the MS. I worked well with the middle school age kids when I drove the School buses. Most of the Drives could not handle the emotional changes kids go through in the middle school ages but I could. They are fun if you can adjust to "them".
Anyway, I'm not medically trained but if you having the gaba making you loopy, try 300mg @pm and 300 @am see what it does for a week, then try 600 @am and 300@pm if the 600/day is not enough. After you know what works best for you, then tell your doctor. Also try eating before taking the gaba too see if that helps. Over time you might need to increase you dosage more than the 900mgs/day BUT talk to your doctor first before increasing above the 900/day. Sometimes the body needs to adjust to the gaba. I am trying to remember but I do believe that I felt a little loopy at the lower dosages. I am taking so many different meds now, that I can't really pinpoint the gaba affects on me now. I do feel a little bit loopy but it wears off quickly.
Yes, over time . . . our new "norm" changes and we just have to learn to adjust to it. Good luck. If you ever need too, feel free to pm [private message, via the "chat" button above] me. ~terry
I also meant to ask you what you plan for your DMT [disease modifying treatment]. I have been on Rituxan for the last couple of years and just recently with new MRIs was declared stable for the first time since my dx [diagnoses or diagnosed] in 2007. I was first given dx with RRMS but believe now that I am PPMS. If my neuro had dx me with anything different than the RRMS they would have had to stop treating me, cause at the time there was now known treatment for anything than RRMS and I would have to rely on my PCP [primary care doctor or primary care provider] for any MS symptoms. When I started with Rituxan [off label use for MS], Ocrevus was not yet on the market for use. Ocrevus has since been brought to market and FDA approved for MS use. Many neuros are using Ocrevus for their patients with progressive forms of MS. Ocrevus is and "updated/upgraded" version of Rituxan. Please review my previous posts/replies re: Rituxan on my profile page. You will find many people here who are on, starting, or considering Ocrevus { healthunlocked.com/mymsaa/p... } as a DMD. ~terry
Oh yeah, wow! Sorry to hear the PRMS, but yeah we all keep truckin on finding something we love doing, even if it's new! Welcome here to this Precious Family, we're here for you..💜❤🙏😻😍
Welcome to the group alimitchell1 sorry for the diagnosis. I'm Jessie, I have had RRMS since 2006 and was Copaxone and now on Tecfidera for the last year. Will be seeing a new Neuro in July and most likely a new MRI to follow to see how the Tecfidera is doing.
Welcome to the group, look forward to getting to know you.
I too have been told I have progressive relapsing MS and or primary progressive MS. This was by my MS specialist neurologist. She says it doesn't matter exactly what it is called, it is MS and no two MS cases are alike. I started Ocrevus June 1 last year and I did not have any new lesions for the first time in the four years on my last MRI. I have seen this neurologist for four years. I am encouraged.
Sorry to hear of your tough diagnosis.Also had these tests,very stressful time for you & family.Hope you get on treatment that helps,try to stay positive.Easier said than done I know.Great people on this forum for advice& uplifting stories.😀🍀
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~terry
Introduction to me! Hi, My name is Lisa!
my long overdue introduction
numbness in face here and there
Ocrevus: FDA Approves First Drug to Treat Two Forms of MS
Secondary Progressive MS
