FAQ/Help |
Calendar |
Search |
Today's Posts |
|
![]() |
#1 | |||
|
||||
In Remembrance
|
(((((Maryann))))) It especially worries me that you are on Tysabri and your MS seems to be getting worse. If I were you, I would stop the Ty and have a thorough exam for the possibility of PML entering the scene.
![]() I know, scarey, but the possibility is there and if you catch it early you have a better chance of getting better. I'd stop the TY anyway as, Obviously it is not working for you. ![]()
__________________
~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
|||
![]() |
![]() |
![]() |
#2 | |||
|
||||
Senior Member
|
Hey MaryAnn. How I hate what MS is doing to you right now.
I use a rollator too. I also have one of those small electric chairs (Jazzy) that can break into 5 pieces to take in the trunk of my car for outside trips. I will probably use it indoors if/when the time comes. I chose a chair rather than the ever so popular scooter. I liked the turning radius more. MS Yoga sounds so great. I tried regular yoga and it was a total disaster. I felt bad for the class in that the instructor was freaked by my presence in her class and my desire to modify her routine. So embarrassing but ![]() I would love to have PT!!! I think all MSer's should have that available and offered. And a massage! I may not feel parts but getting a nice rub with oil, just my kind of therapy. ![]() Give Monty a treat from me. |
|||
![]() |
![]() |
![]() |
#3 | |||
|
||||
Senior Member
|
![]() ![]() |
|||
![]() |
![]() |
![]() |
#4 | |||
|
||||
Senior Member
|
Maryann, did they do the JCV blood test on you that people get when on Ty? Maybe you are not a responder to Ty. Two new oral meds will be out soon, maybe that might be something to think about.
What does your Neuro think about this down hill slide? I hope the IVSM and taper kick in and that you feel better real soon. ![]()
__________________
LADY May happiness be at your door. May it knock early, stay late, and leave the gift of good health behind. "Life is what it is". We can only focus on controlling those things we can control, we must let go of the things we can't. |
|||
![]() |
![]() |
![]() |
#5 | |||
|
||||
Elder
|
MaryAnn, first and foremost, HUGS!
![]() Walgreens.com has a portable scooter very reasonably priced, and its light weight and easy to travel with. Pops apart and pops right into your trunk. Easy to care for, and half the price of most others. I agree with the others that the JC virus scares me, and I would want to be tested if I was on TY and doing poorly. I hope you at least have that talk with your MD. Congrats on doing a full year btw! Please know we are here, even if just to hug you or listen. ![]()
__________________
RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
|||
![]() |
![]() |
![]() |
#6 | |||
|
||||
Senior Member
|
First, I wanted to offer you hugs. I'm sorry you are feeling so poorly.
Second, I do not want you to get frustrated with recovering function after a flare. It can take time. I was really in a bad way for a couple of years. It took pulsed steroids every 3 or 4 months and the right balance of Baclofen to find my way back to "better". I'm not "normal", but way better than I was. Since I've been stable like this for a couple of years, I guess this is my new normal. Finally, do not underestimate the toll that stress and upset can take on your MS. You have a lot of stress and worry right now and that can really do a number on you. I think the yoga is a wonderful idea for that. You really need to take good care of you right now so that you are able to help your hubby.
__________________
Dx: CNS Demyelinating Disease (2005) Take me back to days full of monkeyshines Bouncin' on a bubble full of trouble in the summer sun Keep your raft from the riverboat Fiction over fact always has my vote And wrinkles only go where the smiles have been... Jimmy Buffett from "Barefoot Children in the Rain" . |
|||
![]() |
![]() |
"Thanks for this!" says: | azoyizes (08-27-2010) |
![]() |
#7 | |||
|
||||
Magnate
|
You guys are the greatest!
Sally, they are monitoring my bloodwork closely. My home health nurse is going to contact my neuro next week to give him her report. Then, he will contact me with further instructions. The TY was holding me in a steady place until this last flare. Stress with my DH's cancer and the heat I'm sure are what caused the downhill slide. Thank you about the information on the Jazzy chair. I am definitely going to look right into it, plus the one sold through Walgreens. Thanks, I never thought WG would carry any type of scooter or chair! I'm also going to contact the medical supply company where I bought my last Rollator and forearm crutches to see if they have what I want and how much Medicare will cover. As an aside, Arnie has been on 25 mg of Sutent for 11 days now. His side effects so far are minimal. We have an appointment Sept 1 with his oncologist at UVA. Please keep him in your thoughts and prayers. Monty has been a wonder dog lately. He can sense when something is wrong with me. He does everything I ask and more. I don't know what we would do without him. Hugs to all of you, my friends!
__________________
Mair . |
|||
![]() |
![]() |
Reply |
|
|
![]() |
||||
Thread | Forum | |||
Downhill slide with fibro | Fibromyalgia and Chronic Fatigue | |||
Myasthenia Going Downhill | Myasthenia Gravis | |||
Am I going downhill fast, or does everyone feel 100% worse in hot, humid weather? | Peripheral Neuropathy | |||
Body Going Downhill - ALS? Other? | Neuromuscular |