I had started dragging my left foot a little and holding my last hand in a fist, against my chest. I started thinking "maybe I've had a mini stroke". It was that thought that started the January to July (2008) search. My primary care said "no stroke" and sent me to a neurologist. MRIs, blood tests, electro-something, ending with spinal tap followed. Each time he'd say "if you were younger I'd say you have MS". I was 64.
Eventually he sent me to an MS Specialist who said in 5 minutes "you have Primary Progressive MS". He said I'd had MS "for decades". Within 3 months one symptom, nerve pain, had disappeared. He changed me to Progressive Relapsing calling that a relapse. It's never returned.
Looking back, I could see progression. A year before I'd dragged my foot and fallen breaking my left ankle. A little numbness in my left hand and foot. Year before that my left knee buckled tearing my miniscus. A few years before that, an MRI on my left knee for knee pain.
It started with ON in my right eye. I lost the sight completely and had an mri & LP which both supported a dx of MS but I didn't actually get the diagnosis til 4 months later when I had ON again in the other eye. My symptoms are really all sensory (numbness, tingling, feelings of weakness, buzzing ear & of course, vision problems) I've had symptoms for years but never really took any notice until I lost my sight. I'm still only 34 and they tell me that young onset, sensory symptoms and ON as a presenting symptom all suggest a milder disease course. The tremor has actually gone today so I'm wondering if it's coz I slept well last night as I usually get less than 5 hours day due to my youngest's terrible sleep pattern!
PPMS and SRMS are much harder to diagnose than RRMS. PPMS is much subtler and most people have it for decades when they look back on it after diagnosis. It does not really matter what category you are in. My Neurologist about changes his mind each time he sees me. Each of us follow a different pattern. In MS there is inflammation and with it symptoms come and go. There is also nerve damage which leaves permanent symptoms.
I had had MS for 46 years by the time I was diagnosed. They were stumped because my damage could be traced to infancy which did not fit the norm. All my tests showed strong MS. I thought my symptoms were normal because I never knew anything different.
I have PPMS and it took over 40 years for a diagnosis but you would not know I had MS at all unless you knew me well.
My symptoms are permanent double vision, vertigo, cognitive issues, deafness, fatigue, heat intolerance, and slower walking.
Thanks, yes. My double vision comes when i move my eyes to the left. In the 4 years since diagnosis I went from occasional cane use to, now, daily power chair use. Slurred speech and cognitive issues are common.
We are all so different. I've wondered, what gets each of us to go for all those darn tests.
What gets us to get those tests are this.....we want answers. Lol. We all are different. As for me. I just got my golden ticket last month. I don't want to see the chocolate factory mommie lol. I don't want this.
I should have seen the signs but I was too busy. And my symptoms come and go. Sometimes years went by. When they would strike in my 20s. I would be like. Wow this is an intresting sensation. Then in a week or two. Poof those were gone. My Nero caught me in an active phase. Thinks to my blabber mouth husband. I was fine going thru life going hmmmm. And then Poof. At least they Poof away lol. I don't want them to stay. As for me. I have rrms. Still don't completely understand. And frankly I am fine with that. To me some.things are better left alone.....for now. I know a lot of people don't agree. But for now. I really feel that way. Maybe cause I just got my ms may 1 2012. Maybe I'm in denial. Probably .... I didn't go looking for this. It found me. Lol
As for your question. Vision. Def vision. Along with a very weird balancing sensation. Along with why is my arms so numb?? I think im stroking out. It's awful when I go thru an episode. That's what I call mine. I hate hate them. They interupt my life. Ugh. Sorry I'm venting.
My initial symptoms that led me to the ER (after a phone call to my primary - he said to go to the ER) were: really tight painful spasticity in the back of my left thigh, urinary symptoms, along with numb/tingling in my left foot/toes.
That was back in Jan 2009. Although the symptoms started a month before that, but wouldn't be constant - just one day and then go, and then back the next day.
I have a Dx of RRMS, but I still hold to PPMS because my symptoms have never left me - they just continue to progress.
My case is similar- but with a different form of ms. In 2010 my left hand started shaking and jerking around. It finally ended up with my hand clenched in a fist, and my arm was bent into by chest. That led to my first series of MRI's. No diagnosis yet though.
The next year, I had another relapse that affected my left leg and my my left arm was worse. This attack eventually led to my diagnosis, but after going over my history, my doctor and I figure I have had this since probably the late 90's, or certainly by 2001.
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