My symptoms became obvious after I miscarried in the 2nd trimester of my 3rd pregnancy. My husband tended to get panicky if anything was wrong w/me, so that combined w/my distrust of drs. and plain Irish stubbornness kept me from seeking help. Anyway I'd been raised to believe illness was a sign of weakness and I wasn't about to be weak. I'd play off the symptoms, pray and stubbornly forge onward.
Many years, w/many symptoms that didn't seem to fit together and thus were ignored, & soooo many trials later, I started falling down a lot. I had fallen infrequently for no apparent reason, off and on for years. Now I was falling down stairs and the like and I couldn't hide the importance of that from my family. I had already been pushing drs. for a reason for my various symptoms and was always being told that there wasn't anything wrong w/me. It was all in my head or the results of depression. If I wasn't depressed before, I sure was after 5 years of that. Then I landed in hospital w/my entire left side numb & tingling. The ER doc listened to what had been going on, ordered a catscan and said he was referring me to a neurologist (FINALLY...after years of pushing at the drs). He said he suspected possible MS (I had been telling this to my reg.dr for 2 years). Catscan came back clear, I saw a neurologist, she ordered an MRI...I waited... Results came back & in the drs. words 'showed multiple white masses indicating possible MS'. I went through a battery of tests and was diagnosed with secondary progressive/remitting, though the Drs. official dx was relapsing/remitting. She said this would make me more eligible for various treatments. I have had several increases in my symptoms and their severity since the diagnosis, in spite of the interferon treatments. I am no longer taking Rebif because of liver problems and am starting Copaxone. I now use a cane, my balance is often on par w/my 1 yr old granddaughter who is just starting to walk. I cannot walk very far at all as I drop w/fatigue at the slightest provocation (I used to walk 3-5 miles easily just for fun). Heat is my enemy, this from someone who grew up in the desert of So. CA. I am weak as a kitten these days, this from someone who did harder work in her lifetime than a lot of men. My neurologist decided I needed to stop driving because I would forget where I was going and have to pull over until I could remember where & how to get there. This from someone who had made a living as an OTR trucker and a bus driver. My life has decidedly changed, talk about understatements.
I still am staying as far as I can from drugs for the different symptoms. I've said no to several, because I am afraid of taking so many, especially taking drugs to counteract side effects. Sigh...I don't know how much longer I can do this. Pain is severe sometimes and symptoms keep mounting (especially after the last exacerbation just 3 weeks ago), but I need to find a neurologist I can trust. When my insurance changed, my neurologist dropped me like a hot potato (I don't blame her, it was her neurological groups policy she had to abide by).
I still have my sense of humor and my stubborn will to conquer this MonSter that has MeSsed up my life.
I belong to an MSN support group whose motto is 'I have MS, but it doesn't have me!' (I know many have heard this saying, but...). That's my philosophy in a nutshell. I may have to use those desperately slow ECV's (electronic convenience vehicles) to go shopping or go to a theme park (I've always been a coaster enthusiast), but I won't stop going just because it's tough.
Anyway, that's it in a few words (yup...a few too many), but my life changes day-to-day, so you never know what I might have to say about the subject tomorrow.
;) Huggs, Dest
P.S. I've begun to go through the symptom part of my profile...that sucker is long and I'm still no where near done with it. I'm working on it. I tend to downplay my symptoms and have a high threshhold for pain, but I will endeavor to be honest here (just as soon as I can be totally honest w/myself about my symptoms. Do I need to leave my home in DeNial?). I am mostly just dealing w/the current day right now and will come back to fill out each symptom from onset as I am able. I'm on the 3rd page and moving slowly, :P but I'm doing it and that counts for something.
;)
P.S.S. I forgot to mention that I had major abdominal surgery on March 7, 2008 to correct a massive incisional hernia. It looks like the last of the surgical incisions will be healed in another week or 3. Seems MS affects healing rates as well. The things you learn and here I thought I was just naturally a slow healer.
- Dest
- Sex: F
- Data Quality: 2 stars
- MS: 31 yrs
- Type: Progressive Relapsing
- Sensation: Severe
- Overall: Severe
- Cognition: moderate
- Vision: moderate
- Speech: moderate
- Swallowing: moderate
- Upper limb: moderate
- Walking: severe
- Dest
- Female, 56 years
- FL, United States