Monday, September 22

Secondary Progressive Multiple Sclerosis


I wish I could tell u that it was simply the lack of exercise in trute OR like last year, was jes ah infection that needed to be cleared up and I moved on. No. Nothing so simple...not at all. I've officially crossed over the line from relapsing remitting MS to secondary progressive MS. the way I've been describing to everyone I've spoken to is "(for me) think about it like a stage 1, stage 2 type of deal". Most (most) patients are diagnosed with RRMS - so essentially the person experiences relapses (exacerbations) for some time and then things go back to normal (my eyesight issues in 2003 (before i'd been diagnosed) and weird happenings in 2007).  About 80% (naturally I would fit into that category) patients with RRMS develop SPMS. The major difference between the 2 is that SPMS patients experience fewer relapses but worsening disability - I really can't think of another relapse after 2007.  The medication I'm on (currently Gilly and in the past Copaxone, Tysabri and Tecfidera) doesn't cure the disease, it slows down the progression so one may presumably argue that had I not been taking anything, I might have crossed over the line sooner than now. 

I actually went to the MSCA on 9/2. Had an MRI of the brain - good news there cuz there's been no change. I'm going to do one of the spine in December and I'm really curious about how that one will look - as much as I would prefer no change, I hope there some kinda explanation for the past month and a half. In light of all my issues, I convinced dr Gilbert to prescribe a bout of steroids - 3 days of IV administration at home. I won't bore u with the steroid stories but they provided some relief altho not as much as the last time as I'd hoped.  Oh I'll tell u this part...the nurse came over on the first day and eventually left after 4 tries to get the IV line in because well the company protocol is that patients must not b stuck more. They sent someone else the next day and the third time was a charm for her. My veins never fail to provide "excitement". Steups!!!

Thru this all, I've been okay - I'm dealing because what other choice do I have? Of course I had to let everybody know and (I think) they're all feeding off of me so we're all good. Hopefully this won't cramp my style and I continue to go out and enjoy life although I've already missed one party (that I NEVER miss) because I jes wasn't feeling up to it. After the party, Assenna actually emailed me to check up on me and make sure I was ok because she I wasn't there (a warm and fuzzy moment for me, I eh go lie) :-)

Sometimes I wonder if I'm in denial about this whole MS thing. Why haven't I gotten angry? Why haven't I cried (because I have it NOT because I cyah play mas)? And then I think, "well. What the hell is all that going to accomplish?" I'll jes get my panties in a bunch and because I'll b stressing, my body will probably shut down and then I'll cyah move and get more frustrated and all that for what? For NAUGHT so best I eh bother. 

So I'm adjusting to this new level and trying to do things as "normally" as is physically possible - altho, it's been tough dealing with my decreased independence - and i'm afraid to try to do things because, well suppose disaster strikes?  I've already bought my ticket for Miami carnival - looking forward to jes being in FL.  This year, the plan was to play j'ouvert instead of going on the boat but I stickin now in light of everything.  I'm still learning this body and what it can and cannot handle - have bout 2 weeks to make a decision.  

I have another update but this post is already long enuf. I gone so!


  1. Hi Stacey -

    I have been following your blog for a while now, I even went back and read from the beginning, so I feel like I kinda know you although I am a complete stranger to you! I was diagnosed with MS in July of 2013 and since then I have been reading tons of books, articles, etc. relating to the disease. I'm pretty sure I found you when I googled alcohol and tecfidera! lol

    I am sorry to hear that you have progressed into secondary progressive ms, but that is why I am reaching out to you today. One of the books I have read recently is called The Wahls Protocol, by Dr. Terry Wahls. She also had progressed to SPMS to the point of being in a tilt/recline wheelchair for 4 years. She was told she would spend the rest of her life in a wheelchair, but she could not accept that! Instead she started researching about how diet and nutrition might be able to help her condition. In under a years time, she went from being in a tilt/recline wheelchair to taking an 18 mile bike ride! She has successfully reversed all of her symptoms just by changing her diet, her story is amazing! You can google her, she has about a 20 minute video called "minding my mitochondria" that will help explain what the change in diet actually does for your body. I found her book on FYI. I have slowly started to adopt her diet, although "i eh go lie" :) it's not easy! It takes a lot of will power and determination, but I truly believe nutrition is the way to go! My goal is to eventually come off of MS medications all together, although I do not feel confident enough to do that yet, that is what I am working toward.

    Another good book I read is "The Immune System Recovery Plan" by Dr. Susan Blum, this is the book that started the change in my diet, and I am slowly transitioning into the Wahls Protocol.

    Anyway, I just wanted to share this information with you, I hope you take some time to look into it! I enjoy reading your blog and think you have an amazing spirit! You helped me through the acceptance process and let me know that its not the end of the world and life goes on! All without even knowing you did, so thank you :) I look forward to more blog posts from you!

    If you decide to read either of these books, I'd love to hear what you think!

    Take care :)

    1. I've been meaning to respond to u for soooooo long. Lol sounds right that that's how u found me. I've had some comments stating as such and I googled "Tecfidera and alcohol" and my blog was the first link! These days, it's moved down the list.

      Thanks for sharing all this. I'd heard of

    2. Ugh. Not sure what happened there. I'd heard of dr. Wahls before and never thought about changing my diet until recently - I've been giving it much more thought now. What I am interested in too is "how is she now"?

      I haven't actually completely committed but u'll know how things go. Would u mind my emailing u? U can email me at the link on my profile.

    3. PS I have gotten her book...haven't started reading yet tho :-( GREAT use of "I eh go lie" :-)

    4. I'm glad you got the book! It's definitely a hard change to make, but I gotta say I feel so much better, and I haven't even completely transitioned yet! As for your question, how is she now? I believe she rides a bike 5 miles to work and back every day! Do you have facebook? I "liked" her page and see her posts all the time. I have found a lot of MS info on facebook actually. Let me know if you use it and I'll tell you about a few pages for info, recipes, etc.

      Yes, feel free to email me at, I'll probably respond quicker from there anyway!

  2. Aw, man. So sorry to read this. Hang in there...