Oleblue, you probably know mine, but when dx was R/R with mild secondary progression. First major symptom in Jan. 11', DX in Sept. 11', and not getting any better now. In fact, getting slowly worse. Feel like every day or other day is another relapse. Don't know if that means I'm completely SPMS now or what. Ugh. HUGS.
Hum KatDT that is sucky. Ishould've been dxd w/ SPMS right off the bat instead spent 4 yrs on drugs that did nothing except keep me quit while MS detiriorated my body. who know if I had gotten the correcy dxd sooner maybe I could still drive. cuz now I am on an IV med that treats SP and I have prgressed very little in h last 2yrs. My advice see an MS specialist if not change nuero's. Not only cuz rr drugs do nothing for SP but MS specialists know there s**t & in my 7 yrs w/ MS I have never heard ur dxd. Dr's for some reason maintain a dxd of RRMS so u can still get shots, be cause they think they help??? Don't get it. In my opinion u should get a 2nd Opinion. My nuero dxd me the 1st time I saw her.
Thanks, Jenwspms. I was dx by an MS Specialist...a good one. I think the thing is, It's gone downhill since then (Sept). I will push for another round of MRI's soon to see what they show. When you go to SPMS, it shows in your MRI's, right? --more lesions or growing lesions, etc?
HUGS
It was actually quite the opposite 4 me. wen dxd my neuro said "we don't have to worry about lesions anymore now its brain shrinkage" scared the bejesus outta me I had no idea what she was talking about. So I did some reasearch on my own. knowledge is power for sure. Ask the right people the right stuff and always takes a docs advice over peoples "stories".
Thank you Jenwspms. I really appreciate your insight & help. So once it becomes sp, the brain starts shrinking? I can see why that scared the s$$$ out of you to hear that (HUG). I honestly didn't know this. Did your neuro tell you why this is? Thank you.
I didn't even ask I was so bewildered,she didn't know this was the 1st time I've ever heard that. So I think she was ....indelicate about telling me. And honestly she doesn't bring it up , I don't want to descuss the implication of it with her. I just feel like she ain't bringing it up she mustn't be worried about it, what goo does it do for me to worry about it. Not like I can do anything about it. If she can she will.
I Know it STEVP, and I think that is so......dumb. I understand y they do it, I just think they more than any1 know the shots don't do anything for SP! OooI guess its a new MS pet peeve 4 me. along w/ illegal handicap parking and people telling me I dont LOOK like I have a chronic, dibilitating disease, I never thought twice about it, just shook my head in disaproval. Now huha, Comes w/ the MS territory I guess.
I was diagnosed with primary progressive MS. My cancer doctor found it on am MRI, contacted a neurologist and it was confirmed. No treatment just management. I am on all kinds of pills and I can walk. I am not as sharp as I used to be and have memory issues. I have had cancer and MS. The bigger challenge has been MS as I am not the person I used to be. It robs me of me. Cancer prepared me for MS. It taught me the world is not fair. I reach down deep everyday to grab the goodness life has to offer. I used to be a rock climber and an outdoor person. I still try to hike and some days I am doing ok and other days it is just too hard.This is a roller coaster ride to say the least. Can I join this group even though I am primary progressive?
sounds good to me, but it's not my group, Yeah MS pretty much has no upside or light at the end of the tunnel just sux 4-ever.
I used to sing a lot was studing to b a chior teacher when MS hit me @ 21, liked to hike and rock climb definetly not seriously. I am starting to think that MS attacks muscles that we use the most. Walking seems to b a universal symptom cuz every1 walks b4 MS. For me besides my walking slowly going down hill, I have no vocal control any more. Throat, lips, saliva control(meaning I choke on my own spit sometimes just start coughing) breathing, the works. The voice is still in there I jut can't get it, so sux.
I have this untested theory that because the only time I ever had a relapse I was in my math class, and I guess stressed my eye muscles trying to read my math book, got a magnifing glass and finally my eyes went double vision and I had to drop out of college with 1 class left, couldn't drive.
I have had MS for 7 years and have slowly gone down hill. From driving w/ a cane, to no frwys, to no driving at all, to 4 point cane w/ scooter for more walking(ie trips to the mall or walmart) to now a walker for 2 years. Luckily my therepy is slowing my progression and I feel is really protecting me the best anything could. I can actually feel the difference when I get it every 6 mos. Very few treatments 4 SP and 0 for pp. I am so sorry for that.
We just need to keep on keepin on, and by that I just mean hold on to what makes u you, thats what I think is the Insidious evil of MS, not just losing the ability to walk, it feels like ourselves r slipping away. Depression, memory loss, sustained loss of control over years. My mom said " I don't care if u can walk or even get outta bed, as long as u can turn your head and talk to me" And those r the connections MS interupts, relationships, ur friends and family will always love u even if ms disables you, those reolationships r just under attack constantly, we just need to be strong enough to fight back w/ and how ever we can.
HUGS
I used to sing a lot was studing to b a chior teacher when MS hit me @ 21, liked to hike and rock climb definetly not seriously. I am starting to think that MS attacks muscles that we use the most. Walking seems to b a universal symptom cuz every1 walks b4 MS. For me besides my walking slowly going down hill, I have no vocal control any more. Throat, lips, saliva control(meaning I choke on my own spit sometimes just start coughing) breathing, the works. The voice is still in there I jut can't get it, so sux.
I have this untested theory that because the only time I ever had a relapse I was in my math class, and I guess stressed my eye muscles trying to read my math book, got a magnifing glass and finally my eyes went double vision and I had to drop out of college with 1 class left, couldn't drive.
I have had MS for 7 years and have slowly gone down hill. From driving w/ a cane, to no frwys, to no driving at all, to 4 point cane w/ scooter for more walking(ie trips to the mall or walmart) to now a walker for 2 years. Luckily my therepy is slowing my progression and I feel is really protecting me the best anything could. I can actually feel the difference when I get it every 6 mos. Very few treatments 4 SP and 0 for pp. I am so sorry for that.
We just need to keep on keepin on, and by that I just mean hold on to what makes u you, thats what I think is the Insidious evil of MS, not just losing the ability to walk, it feels like ourselves r slipping away. Depression, memory loss, sustained loss of control over years. My mom said " I don't care if u can walk or even get outta bed, as long as u can turn your head and talk to me" And those r the connections MS interupts, relationships, ur friends and family will always love u even if ms disables you, those reolationships r just under attack constantly, we just need to be strong enough to fight back w/ and how ever we can.