Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Ive had relapsing remitting ms for 7 yrs generally good health aside from fatigue n insomnia but this year has been hell..yes i feel better than i did in earlier few months however i dont feel like im getting better n no my symptoms never went away n yes they r still here but the intensity of the pain is higher n more frequent..also i seem to have aquired a limp from the leg pain i have. my ques is when is it considered a change is type of ms?i know how it all works n rrms u have a step incline where u have relapses then periods of remission n so forth but damn this is not going away as it is getting worse i think..do u need to be declining for a certain period of time before ur ms category change? its been one year since my symptoms have started n never left n it only took one year from working like a mad woman to ssdi n a damn cane n a limp..so when is it time to say jackie, uve progressed to secondary blah blah blah?...ugh currently on my sofa waitin till my leg pain lowers a bit so i can cook dinner..what takes simple half hr penne n vodka sauce takes me damn near two hrs depending on how much i stop to rest..blah
Wondering what does your neuro say? SPMS is like what you describe and I think only your neuro can tell you for sure and they like to keep it RRMS so the insurance company don't stop paying for a med. Maybe it is time to change meds, I don't know what your on but maybe there is something better for you. I've read what a hard time you've been having and you owe it to yourself to check on a different med maybe there is something that will help slow the progression better. I wish you the best of luck
Take Care
Dave
That's a good question for your neuro next time you see him/her. Like Dave said, many doctor's don't want to classify your MS as SPMS because the ball game changes with the medications approved in the system. I know, that suxs.
My neuro agreed with me, saying it is about 10 years from diagnosis that this will happen. He did not add it to my medical records, though, because then I would not have an option to go back to drugs if I changed my mind. (There is no drug for Progressives.)
I have foot drop and a limp that is getting worse over time. I still work full-time, though. The rate of progression is what the big question mark is for everybody.
Bottomline ....my thought is forget about whether you have secondary progressive. You are young with a long life ahead of you. There is research being done as we speak on treating the progressive phase. And things vary so widely...look at my friend at 65 walking and driving with PPMS.
I think the best we can do for ourselves is be as informed as possible on how to keep as healthy as possible like in Dr. Wahls ideas on diet (2nd person to come out with a book on food as a medicine to treat secondary MS), supplements to keep inflammation at bay and just live one day at a time. I have friend who had a heart attack and stroke at 37. She should be dead. She is 60 today.
It is her attitude that has saved her. She lives one day at a time, she cracks me up with her sense of humor and she inspires me with her determination to survive and enjoy life as much as she can. She has pain, is paralyzed on one side, has aphasia and some other nasty problems but she is determined to carry on. This is why she survived.
I made it thru the 2 yr wait for medicare - its not easy but there is help out there if you look (sometimes you have to look very hard). Are you eligible for medicaid and do you have a helpful dr. treating the pain? That is key.
I really wish you the best. Don't let this disease cheat you out of enjoying your 'youth' and your life..
Melanie
I've given up on the docs doing anything to help the MS! At this point if they can just help me to control all of the severe pain & spasms I'm happy with that!
As for drugs for SP, there ain't none. As soon as the doc hears you're SP, the attitude is (at least here in the UK) please just go away and die.
I saw a supposed top specialist and within the first 10 minutes of the consult he kindly informed me there was nothing that could be done, no tysabri, no interferons, nothing - wasn't even interested in getting an MRI done. Basically, once your'e SP, youre a car crash and written off.
Just had my 20yr fibro dx thrown out for a MS dx. Neuro is spitting mad that I have gone misdiagnosed and untreated for so long. Still undergoing some tests and seeing specialists at Vanderbilt before he will tell me more.
Overheard him tell my hubby that he hopes to help me some, but is afraid that I have gone so long that certain things and damae may be permanent.
When in my 20's would have flares and then remissions. Now it has been solid for 5 years. Does this mean I have passed into secondary before even being diagnosed?
Trying to deal, yet scared and confused.
Tonna