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Update: IV Solu Medrol
After great thought and some research, I decided to go for my first monthly infusion of IV Solu Medrol. I had my whole spine MRI, including the lumbar just recently, and over these years I've probably had the best workup done, as far as the mimics are concerned. So far the MRI of the spine has showed nothing (nothing structurally) and I've never "hit" on any MS mimic blood panel, so I felt comfortable enough seeing what effect the steroids would do. Something was wrong in the spine since I did have an abnormal SSEP that showed slowing...It just wasn't showing on MRI yet.
I was a little nervous to say the least, but I was ready to gamble and see what this could do. I think my neuro felt the same way. Most of my old neuros stop at this point and just watch me deteriorate some more, recommending symptomatic treatment, and then each year I have lost ground. This has been the most frustrating part. My husband and I have thought that at several points that no help would come until it was too late and I would probably loose my ability to walk by then. But this neuro is different...he's always thinking, and always hands on with his care.
Thursday I had the infusion. I had some minor side effects. I had a horrible taste in my mouth..YUCK! Steroids aren't tasty☺. I was also jittery for a few hours afterwards. It felt like I drank too much coffee and I hate caffeine. The next few days I felt a roller coaster of emotions. It wasn't too bad..but I made it through that hump. I would feel happy one minute and feel sad the next. I'm not sure if it was the steroids or the reality of everything setting in. I had lots of questions..Will I improve? How long will it take? What if I don't? What if I do?...(you get the picture).
Each day that would pass, my left side would feel different. It's hard to describe. It wasn't better, but something was going on. By Sunday, I had no ups or down feelings and felt mentally back on track. I also noticed Sunday night that my hip felt strange, in a good way, when I got up to get something to drink. Something was changing.
I had been trying since the steroids to move certain body parts that don't move or don't move right (bending my toes, lifting my toes, lifting my ankle, lifting my leg, lifting my arm). Throughout the weekend, nothing had changed, although there was a change in sensation that I started to feel. Some of these things haven't moved right in years, so I wasn't expecting too much from 1 dose of steroids, BUT (here's the best part)..by Monday I could actually lift my leg. It was shaky and weak as heck, but I could lift it and my walk seemed a little better.
My toes and ankle are the same..but my arm and hip seem a little better. Baby steps is all I'm thinking. When I woke up my husband yesterday, the first thing I said to him was.."Look what I can do!" and I proceeded like a mad woman lifting my leg sitting on the edge of the bed. I also called my Mom and told her and now I'm telling all of you.
I'm not sure what this will mean for me and my diagnosis. Frankly I'm just so fascinated with my leg right now to even think about it. I guess you have to understand where I'm coming from...Every time I've had a body part that suffered from spasticity it's never recovered or went back to a good norm. It's just went down hill and progressed. This is the first time that I've gotten a little something back, instead of loosing more ground with it...and that's earned me some bragging rights☺
Take Care
I was a little nervous to say the least, but I was ready to gamble and see what this could do. I think my neuro felt the same way. Most of my old neuros stop at this point and just watch me deteriorate some more, recommending symptomatic treatment, and then each year I have lost ground. This has been the most frustrating part. My husband and I have thought that at several points that no help would come until it was too late and I would probably loose my ability to walk by then. But this neuro is different...he's always thinking, and always hands on with his care.
Thursday I had the infusion. I had some minor side effects. I had a horrible taste in my mouth..YUCK! Steroids aren't tasty☺. I was also jittery for a few hours afterwards. It felt like I drank too much coffee and I hate caffeine. The next few days I felt a roller coaster of emotions. It wasn't too bad..but I made it through that hump. I would feel happy one minute and feel sad the next. I'm not sure if it was the steroids or the reality of everything setting in. I had lots of questions..Will I improve? How long will it take? What if I don't? What if I do?...(you get the picture).
Each day that would pass, my left side would feel different. It's hard to describe. It wasn't better, but something was going on. By Sunday, I had no ups or down feelings and felt mentally back on track. I also noticed Sunday night that my hip felt strange, in a good way, when I got up to get something to drink. Something was changing.
I had been trying since the steroids to move certain body parts that don't move or don't move right (bending my toes, lifting my toes, lifting my ankle, lifting my leg, lifting my arm). Throughout the weekend, nothing had changed, although there was a change in sensation that I started to feel. Some of these things haven't moved right in years, so I wasn't expecting too much from 1 dose of steroids, BUT (here's the best part)..by Monday I could actually lift my leg. It was shaky and weak as heck, but I could lift it and my walk seemed a little better.
My toes and ankle are the same..but my arm and hip seem a little better. Baby steps is all I'm thinking. When I woke up my husband yesterday, the first thing I said to him was.."Look what I can do!" and I proceeded like a mad woman lifting my leg sitting on the edge of the bed. I also called my Mom and told her and now I'm telling all of you.
I'm not sure what this will mean for me and my diagnosis. Frankly I'm just so fascinated with my leg right now to even think about it. I guess you have to understand where I'm coming from...Every time I've had a body part that suffered from spasticity it's never recovered or went back to a good norm. It's just went down hill and progressed. This is the first time that I've gotten a little something back, instead of loosing more ground with it...and that's earned me some bragging rights☺
Take Care
So incredibly happy for you!!!! I know that's a great feeling! And the SM does seem to keep working for me and I took it plus the pred. pills a month ago. :)
Very happy for you!! Bet a lot of relief is what your feeling right now! Congratulations!!
Kelli
Very happy for you!! Bet a lot of relief is what your feeling right now! Congratulations!!
Kelli
That is the BEST news!!!!!!! Kudo's to your dr for taking the chance and to you for having the courage. I am so happy for you.
Enjoy and brag away!!
Julie
Enjoy and brag away!!
Julie
Thanks Paula. I see your doing some steroids right now too. I hope you get some relief as well.
I'm already on the schedule for my next infusion next month and I go for a VEP tomorrow. I'm thinking if 1 infusion does this..what will 2 do? I'm excited to see if it can bring me back to walking without this darn limp that has been my unwanted friend since 2008. Who knows?
My neuro thought it would be a positive reaction. I'm surprised to say the least. I really didn't think that anything could help the leg. I thought it was too far gone, but I guess I need to think more positive. Now that I've experienced a little hope in the form of my leg moving again, I have a new outlook.
I'm already on the schedule for my next infusion next month and I go for a VEP tomorrow. I'm thinking if 1 infusion does this..what will 2 do? I'm excited to see if it can bring me back to walking without this darn limp that has been my unwanted friend since 2008. Who knows?
My neuro thought it would be a positive reaction. I'm surprised to say the least. I really didn't think that anything could help the leg. I thought it was too far gone, but I guess I need to think more positive. Now that I've experienced a little hope in the form of my leg moving again, I have a new outlook.
SB,
Glad you chose to do the IVSM. I did them once and felt wonderful while on them and just remember that it still works for some time after you stop using them so there is a chance the leg could get even better YAY!!!
I am so happy for you, and here is to hoping this works for you and continues working :)
Paula
Glad you chose to do the IVSM. I did them once and felt wonderful while on them and just remember that it still works for some time after you stop using them so there is a chance the leg could get even better YAY!!!
I am so happy for you, and here is to hoping this works for you and continues working :)
Paula
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