I Thought Every Body Did That!

[seal]

Any one has any symptoms, that before diagnosis, you thought were "normal.

In a previous thread, we were talking about "head shaking" I thought every one's head shaked from time to time!

Also, muscles jumping (mine are mainly at night when I get tired). Scared the living daylights out of my boyfriend when my right side practically leapt off the bed!

Also, toes curling down under feet.

[apple19]

The only symptom that I had prior to diagnosis was the muscle jumping, although I didn't think it to be normal. My legs would jerk uncontrollably while I was sitting or lying down. It was quite embarrassing when I was sitting in a large meeting.

Take good care!

[lemstar]

lots of stuff!

My first episode was when I was 24, but wasn't diagnosed til I was 54 because there were no significant relapses, just lots of "symptoms" that I thought were normal. I remember calling my mom and asking if she ever had the feeling that her feet were filling up with hot water. She said no, but I figured [I]she[I] was the unusual one. Another is L'Hermittes sign. I told docs about it, and they just shrugged. (Really? No one picked up on that one??). And another strange one: sometimes it felt like warm water was running downIthe top and sides of my head, also had muscle twitches, ocular migraines, lots of tingling!, some numbness, muscle cramping, extreme fatigue in extremities as though I had been exercising heavily when I hadn't been....
All this stuff, and I just figured everyone had some of these strange things.
And through the years, I would tell all my docs of my undiagnosed neuro symptoms, and they would just dismiss my concerns.....

[fishead]

Come to think of it, I had hand shaking. NOT intention tremors, just shaking when I would hold them up and look at them. I just figured it was "something" that happened because I drank too much coffee, but it often happened BEFORE my morning coffee.

[Cholderby]

Every day, at least ten times a day, I feel bugs crawling up my legs. When I look down, there's nothing there (ok, occasionally there is an ant on me).

I thought everyone felt phantom bugs.

[dyin_myelin]

My hands have always had a tremor. I went on a date with a doctor fifteen years ago. He told me to make a fist and then said that I was "ok," so I figured I just drank too much coffee or it was anxiety. I was also reading about children with leukemia who were "cured" but then went on to develop neurological symptoms--the cancerous cells had migrated to their CNS. I know one of these symptoms well, seeing pinpricks of white light. I have no idea why I thought this was a shared experience with everyone else. I guess optical stuff is fairly common, floaters, afterburn from looking at bright light, etc.

I do have a question though, these mild symptoms that were able to be written off, do they start your "clock" or does your dx? If 90% of people go on to develop SPMS in twenty five years, do I only statistically have ten more years? I know it's a variable disease, it's just comforting to try and quantify it and plan accordingly.

[Thinkimjob]

I have no idea. There's no clock counting down, if that's any comfort. So many of us have no idea when we had our first symptoms and the whole thing started.

It can take years to be diagnosed. And neuros are often reluctant to label you SPMS, if they think the RR dmds might still be doing some/ any good.

I've had MS for at least 15 years. I've been genuinely bad for three. The sensory stuff turned into motor stuff. I was diagnosed after I had ON one year after a bout of numb feet and extreme fatigue. One MRI, and hello MS.

25 years is a long time. No good clock-watching.

[lemstar]

Its almost impossible to know "when the clock starts ticking". I would say it starts when the disease starts (that's when demylenization kicks in), but our statistics and info on how people fare depend on when they were diagnosed, not when the disease began. That being said, yes, there is a wide degree of variability, which makes planning almost futile. I was diagnosed 4 years ago, but have had MS for over 30 years. I am still walking, and doing most things.

[dyin_myelin]

I guess instead of dx I should have said major episode. It's amazing to think that I could have be accumulating damage all my adult life. If you have very minor symptoms you wouldn't seek help for would it clinically be considered benign until the first flare? It's encouraging to hear lemstar that you are doing so well. I've read the people who present with optic stuff do better, but in meeting people and reading personal narratives it seems to be the total opposite.