I thought that instead of incessantly talking about me, I would ask about you for a change! :>)
1. How long have you has MS?
2. Did you think you were crazy when you first had symptoms?
3. Are you taking any medication for your MS?
4. If you are on any meds are they working?
5. What are your worst symptoms?
6. How do you cope?
I will answer these as well after you...
Come sit a spell and shoot the breeze. Sweeten the day with a little synchronicity...
8 comments:
Ok..I'll play.
#1. How long? I was only dx'd 3 years ago...most likely have had it for 15 years prior. In 1989 w/o the benefit of MRI I was told I had optic neuritis, migraines and fibromyalgia by a prominent diagnostic clinic. Symptoms subsided as they will in RRMS, and came back strangley and often enough over the years to yes...
#2 Make me think I was nutz. I had trouble keeping up with work, holding a job, couldn't sit or stand for long..walk, geesh. Weird aches and pains sent me to docs who prescribed antidepressents, cuz..well, i was a woman, a mom, working, stressed..i must need a pill!
#3 I'm on copaxone injections. Flares and lesions still on the rise, so the jury is out on whether or not it is of any benefit to me now. I take Lyrica, and Tizanadine and something for pain when needed.
#4.Slowing the progress of MS? probably not..drugs that help deal with the symptoms are the best I have right now. Provigil for fatigue has been a lifesaver.
#5 Fatigue, being easily distracted and getting nothing done, walking is getting harder..first the cane, now a walker (actually a doggy stroller), and having a hard time with that.
#5 trying to put an emphasis on what I can do rather than what I can no longer do is my hardest challenge. Also admitting that i can't or shouldn't do things...i'm freaking stubborn.
Thanks Merelyme
Hi Merelyme, if you don't mind, I'll just make myself at home here...
1. I've had MS for 10 years and was diagnosed a little over a year ago.
2. I thought I was having a strange kind of stroke. I was running up a hill when suddenly my legs became foreign to me. I couldn't run normaly. Then they went completely numb for over a month.
3. No medication, just supplements, diet, and exercise.
4. I believe the supplements are working! I have to believe that!
5. It's hard to say what's worse. Being unable to swallow and experiencing vertigo are very intense and frightening when they happen but they don't happen very often. Being unable to walk like I used to is the most distressing but not as intense. So... probably the walking is worse.
6. Ummmm... yesterday I decided that I am going into denial for a while. I don't have MS. I can walk just fine. See???
I am enjoying your blog on this lazy Sunday morning!
Oh, what the heck, why not:
1. Dx in 1995 ... probably had it for years before.
2. Nope, just clumsy or injured.
3. Not any more ... the side effects were all too problematic.
4. N/A ... and I could not tell you if they were working when I was on them.
5. Going blind.
6. Sally FORTH!
1. How long have you has MS?
Diagnosed April 15, 2003...yes ON Tax Day! (But most likely have had "it" since 1998)
2. Did you think you were crazy when you first had symptoms?
(I've thought I might border on nuts my entire life...MS now gives me an excuse to act out my role!)
3. Are you taking any medication for your MS?
It is prescribed, but so little is taken. LOL Actually, I'm on Novantrone...the big guns...trying to blow holes in my MS before it blows more holes in my brain.
4. If you are on any meds are they working?
Yep...quite well actually. Until this past week anyway.
5. What are your worst symptoms?
The ones NOBODY else reports! Like pain, diarrhea, vertigo WITHOUT nystagmus...you know...the ones doctors look at you as if you are crazy (see Question #2).
6. How do you cope?
Sometimes I don't...at least not with "style" anyway. I continue to work fulltime, which distracts me from my woes as much as possible. I also have a large support system that holds me up when I'm weak. I don't drink alcohol, but sometimes WISH I did!
i was diagnosed about 4 years ago, but i've probably "had" ms for 20-25 years. there were a few unexplained physical weirdnesses over the years that came and went. they were chalked up to "stress," an explaination i accepted and so didn't think myself crazy. when i finally had symptoms (extreme drop-foot) that i couldn't ignore, the diagnosis came as a relief - to know what it was.
i am currently on tysabri (1 dose so far) - after three years of rebif. don't know if it working, the only way i will know is if my symptoms don't get worse, a little nebulous. there might be some improvement, but that's not likely.
worst symptoms are physical weakness in my legs back and hips, fatigue, some vague cognitive slippage. leg cramps, but they are being treated and are rarely a problem (as long as i have the meds for them.) unpredictable sleep patterns.
how do i cope? ha ha ha! that assumes that i DO cope! my blogging friends help, a very understanding, patient and supportive wife, and my own innate tendency to push my emotions aside and keep moving. (which is not a healthy means of coping, but it works when there's nothing else.)
thanks for asking - these are things we don't often get the chance to talk about.
I was diagnosed in June of 2003 although looking back I probably had my first symptoms back in the mid 1990's.
I didn't think I was crazy when I had undiagnosed symptoms, I thought the doctors just didn't know what they were doing. (I was right).
I'm taking low dose naltrexone. I had BAD side effects from the other drugs.
The ldn has been working great. I hardly have any symptoms now.
My worst symptoms are fatigue and numbness of the legs.
As far as coping...I guess you can say that I never had an issue with that. It is what it is, and I'm okay with that.
Please read my post today - Happiness is being here - you have an award!
DX 1990, symptoms began in 1967 when a pick-up truck hit me,drunk doc stitched me up,fast forward to MRI which showed HUGE lesion right where my head was injured.
No meds (never even took aspirin 'till was in 30s) until 1999, went on Copaxone-it stopped me (or the MS just startd slowing down on its own) from using IV Solumedrol(a cheap,old, drug that works wonders in first years of MS) and I worked 40-50hrs/week for 18 years.
People often ask me that(is it me?) "Did you think you were crazy?" Nope. Not once. Knew I had brain problem,but figured tumor, my partner was ill at the time and that came first. I sat down next to panhandler on dirty, big city sidewalk once, ripped off my shoe/sock--looking for that dang crumpled paper...MS. Nope, sadly, I think too highly of myself to think me nuts.
Worst symptom...hmmm,uh, being legally blind and blind spots(my face size)--scary,but, in the beginning things come and go. Keep reminding yourself of that. It is MS, starts off come & GO. You have been through a lot; my sense is you will get through MS A-OK.
I cope by going outside myself-helping, meeting others, writing, playing, loving, have good friends and good partner of 28yrs, reminding myself that there are so man others worse off than I will ever be and I was never promised a rose garden. I bloom where I'm planted and play the cards I'm dealt, win or lose.
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