I’m in RRMS newly diagnosed. Know nothing about this disease. Been having relapse after relapse. Still waiting to get into a medication regime and where I’m at with this disease. I need support desperately. I’m on my own and finding this disease is very difficult emotionally and embarrassing. I’m looking for help, advice and others who can help share experiences. I’ve always been active in my life, track, gymnastics, body building (for fun) gym everyday of my life. On my kids school PTA EMT for school sports medic. Worked full time after they started middle school and school full time. Plus raising them myself. It all came crushing down after a gallbladder surgery that went wrong.
Started with a spinal infection then right into my lower back and legs. My left side was the worst. Started falling down stairs I would run up daily. Legs giving out in the middle of traffic. Couldn’t feel the ground. Now legs are dragging. Loose bowel movements at work. Extreme vertigo. Falling as if I’m drunk. Never did drugs or drink to the point of being stupid. Muscles contractions all hours of night. Pain....omg this pain. It’s like having a throbbing toothache but 1000 x’s worse. After neurologist (and I’m on #13) was told I’m crazy, nothing was wrong. Then the FM was diagnosed. FM if anyone knew about this word or in a medical field, is a disease (name) given to us by doctors who cannot find anything. Once you tell other doctors about FM, eyes roll and they think and know your crazy. After years of muscle waste, now on disability now it’s MS. Although they suspect it from day 1, I was missing the spinal fluid bands and the optic neuritis. Brain lesions MS specified but no bands no MS.
Talk about a roller coaster.
Eyes wiggle, blurred and double vision-chronic dry eyes.
Vertigo-due to medications.
Electric shocks going through my body and legs- was told no MS.
Leg tremors-in extremely cold conditions and upon activities- not MS.
Ms Fog- doesn’t happen.
Brain lesions-from smoking cigarettes. Or migraines. Never had migraines.
Chest or Ms Hug-does not happen with MS or never heard of.
Bowel and urine issues-happens to everyone.
The list goes on. Spastic legs and arms now in face have moved up. No answers.
It’s pretty hard to not think you’re going crazy when you’re being told this. Although I adore my neurologist who finally diagnosed me, this certainly seem to be my death sentence. 1 month after this diagnosis melanoma cancer was also slapped in my face. 3 positive bumps. And they keep coming. I’m fighting both the best that I can. Relapse’s are my worst fear since I’m in #3 now. In just 1 year. This is certainly a wake up call and pretty scary for a person who’s always been top notch health, on the go every day of my life. Too now home bound. I have a lot of conversation with myself and even arguments. 😂😂 but I’m completely a wreck when I get sick. No idea how to calm myself down let alone deal with this MS Fog! This is the absolute worst. Not having any control over body and mind.
I do believe God gives us what we can handle but I’m seriously re-thinking this one. I can’t handle this disease. And pretty shocked on how my friends just vanished.
I’m also the kind of person who is always willing to help the next too avoid this long road I’ve been on. I’m sure once this relapse or recovery thing passes I’ll change this story. I’m dreadfully sorry to others who also was giving this diagnosis. I’m grateful I’m not alone either.