So the past 2 days it would seem that my latest flare symptoms are coming back now that the steroids are out of my system. I thought it was over, I declared I was "back". I apparently jumped the gun. I do feel better, my legs are working without a cane again, however, my leg and bladder spasms are back, as is the pain that goes with them. My neuro predicted in the recent past that I'd probably have these symptoms going forward and I thought he was wrong when I had 4 or 5 good days in a row. I guess it was the end of the steroids that made me feel so good and that he was right. I of course am disappointed he was right.
Now, I have to figure out how to deal with these spasms and pain and adjust my meds accordingly as my Neuro is letting me "play" with the dosage, giving me the maximum I can take and going from there. It's 4am right now and I awoke because of bladder spasms and pain and problems urinating. Yesterday, the nurse from Rebif stopped by and showed me how to use the med. My doctor wanted me to use Rebif due to the fact it supposedly works better on Spinal MS, which is where most of my lesions are located. I've been on both Avonex and Copaxone the past 5 years with various allergic reactions so I had to stop both. I am hoping I do not become allergic to Rebif. I'm also hoping that my doctor is correct and this does slow down the progression of my Spinal MS.
One thing that is still on my mind from my discussion with the Rebif Nurse is that when I told her I have a few brain lesions but many more spinal lesions, she said to me, "well you know spinal lesions are the ones that give you disability, brain lesions provide more of a cognitive issue". Well, yes, I do know that and I'd frankly rather not think about it. So I may be disabled, but, I'll be "with it" and able to think and speak. Not sure which is worse. What I do need to find out is what controls swallowing - the brain or spinal area - I've had trouble swallowing in the past and it seems to be acting up occasionally.
So I guess after this latest flare these symptoms are with me to stay and I just have to accept that and get used to it. My mom was very stoic in dealing with her MS symptoms and disease when I was growing up. I wish I could be and be as strong as she seemed to be. I personally still after 5 years since diagnosis feel that I'm in denial - at least a little. Or am I just dealing as I can? Not sure honestly.
7 comments:
Hey there...thank you so much for stopping by my blog. wow...you are going through so much. It is true isn't it...everyone's MS is different. I hadn't known that about the difference in the lesions and what they do. My lesions are all in my brain...so far. I am not on any drugs yet but rebif would be my choice based on my research. So I am really curious to hear how you do on it.
My neuro was also talking about the new oral drugs coming along the pike including fingolimod. Know anything about that one?
I love your blog already...I will definitely be back to read more of your story.
Hi Lanette-my neuro doc said the same thing to me-it's the spinal leasions cuasing my problems, where the brain ones are probably not causing an issue at this point.
I start the Copaxone on Tuesday, and I'm nervous about the allergic reactions. My mom was on it for 5 months, then out of the blue had a severe reaction.
I'm afraid my symptoms are here to stay also. It's been over two months now, and the high doses of IV and oral steroids didn't take it away. So now what?
Anyway, I'm here on this ride with you!
Take care,
Abby
Hi Lanette--
You sound a lot like me. I have more spinal cord lesions, and my neuro said the same thing about them being more disabling. I have bladder and bowel problems that have been very annoying, but still manageable so far. Bladder infections, problems holding and problems emptying, bowel problems that are the same.
I had an attack which gave me a lesion on my brain stem and the swallowing issue started (also vertigo and double vision.)The swallowing thing comes back during relapses and I feel like I'm gonna lose it when it happens. This is (in my mind) my most scary issue, but it is isolated to relapses.
As for the spinal lesions being the most disabling, I guess that's hard to say. I went through a year where everything was going crazy and I felt that that was my new normal. But then I did a round of steroids, started Betaseron (very similar to Rebif, which my neuro feels are the 2 best and strongest meds out there) and most things went into remission again. They come out during attacks, but then taper off again.
I am not you, but I have to state this because sometimes when MS seems its ugliest, things can go back into remission and become tolerable. MS is not completely set in stone. I hope this happens for you. But if it doesn't, know that so many people are in the same boat (or MS "short bus") and are here to listen and support.
Sincerely,
Jen
Hi again, Lanette--
I also have to state that from what I've researched and what my neuro tells me, MS even within families does not definitely take the same course. A parent can have an aggressive course and a child can still have a moderate, relapsing-remitting course. So nothing is definite or predetermined (thankfully-- it gives a little wiggle roo.)
I'm writing again because I finally got up to speed with your whole blog. I enjoy your writing style and strong attitude. And I just want to say again that nothing is set in stone. I hope the best for you and I foresee an exciting, happy wedding day.
Jen (now I'm done rambling, I promise!)
Merelyme - Thanks for stopping by! I've heard about the new oral drugs coming down the pike. My neuro made it sound like it was still a few years off though. He actually asked if I would be interested in being in the study - I passed. Especially when I could be putting off treatment of my new spinal lesions. We'll see what happens.
Abby - Next time you see your Neuro ask him about the success of Copaxone with Spinal MS. My doctor told me Rebif works better with Spinal MS. I'm sure every doctor has their own opinion, if you don't mind asking yours their opinion, email me and let me know. Spinal MS is very scary to me...more so than the brain lesions. Ugh.
Jen - I see my Neuro tomorrow (10/6) and I'm nervous. I have many questions and get the results from my latest spinal MRI. Our MS Paths do seem very similar. I've had swallowing problems in the past as well, but like may symptoms they come intermittently. Right now my bladder issues and ongoing leg spasms are bothersome, but, I can handle it. This is my first major relapse since diagnosis in 2003. Mostly because I've had intermittent symptoms, but, have just ignored them. For the past few years - Ignorance was bliss for me. My denial lasted years, not good, but, it did and now I am where I am.
I realize my MS Path may not be the same as my mothers. So far though the similarities are just too much alike. I wonder if I mentally inflict some of it on myself after growing up around the disease. I just keep trying to get healthier and better myself all around, hopefully that will help.
I don't mind rambling, it's good to know someone out there understand what I am going through. :)
Perfect attitude, stay as healthy as you can otherwise. When I was DX in 1990, the spinal cord was rarely looked at, now I notice it is often MRIed. Obviously the majprity of us will have some damage there...I bet it is ecause Drs. still know so little about the brain...there is SOME reason.
They also used to ay "MS is NOT hereditary." Now I see any cases. The Internet took the MS researchers by surprise.
HI Lanette,
The majority of my lesions are in my neck too. The stuff in my brain is very small.
I hadn't heard actual comparisons about which locations of lesions causes more disability. I wonder what other neuros/patients say their experience is with that.
Hope your appointment today went well.
Post a Comment