Last reply 9 months ago
12 years long relapse gap

Back in 2006 had a decent attack of symptoms that last 3 to 4 months off and on. An MRI back then was clear. In the mean time I have had fleeting symptoms, nothing serious or even to warrant a doctors visit. Tingle here and a tingle there, odd muscle jerk. But for seconds only, never even for a day let along a stretch of time. No time off work, in fact in that time I have managed to get fit. Shed 20kgs, walk 10km each day, swim 5 times a week, referee soccer matches. A full life and very hectic physically. Plenty of overseas trips, hot days in India, walking until I dropped sort of days. Then wham 6 weeks ago the symptoms of 2006 have returned but double in size. Tinnitus, headspins, tingling on head, nose, lips. hands, feet, sore heels, fatigue, weak legs and arms. Almost housebound for the past 2 weeks. Can anyone relate to the above? 12 years is a long time, especially with hardly anything if nothing inbetween. Sorry I have to say that the tinnitus, albeit in a mld form has been around for about 10 yrs. Stupidly I have never had it checked out.

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9 months ago

My first relapse in 10 years was right before Christmas my neuro told me it was a mild one. It didn’t seem that way to me I couldn’t feel half of my body. I could get around after a couple of weeks but it took 3 months for all the numbness to go away. At the beginning even a slightly warm shower would bring the numbing back so I had to sponge bath for awhile. I froze my poor husband keeping the house at a balmy 64 degrees. I have recovered but not looking forward to the summer. Potter

9 months ago

@heartland , the MRI scan back in 2006, was it brain and spine, or just brain? Lesions can be located in either/both areas.

Can you recall anything recently that could have caused the return of symptoms, e.g. a stressful event, being over-tired, an infection, etc.?

It does sound symptomatic of MS, but MS symptoms do present in various other conditions too. A further MRI would seem a reasonable way forward.

9 months ago

For about 10 years after my first symptoms (light-headed, weird balance problems – which I more or less ignored), nothing. Then optic neuritis (blind in one eye) which is how I was diagnosed. Then nothing for about 8 years, I carried on hill walking and so on. Then the distance I could do started to go down, till it was about a couple of miles. Then I was prayed for in London, and God touched my legs!
I started walking again, and one day in 2010 I did 18 miles. Then about 2 years ago, I noticed things were deteriorating again. That came literally overnight; I woke up one morning and I could tell something had changed – I was more lightheaded and my legs didn’t feel quite right. Since then there has been a slow, steady reduction in distance again. Now I struggle to do a mile without a sit down. Frustrating? You bet!

9 months ago

I believe I had my relapse after 10 years because I was stressing and doing to much. I was helping with the care of my elderly mother in-law. Cooking and taking her to doctors appointments and my sister had died of ALS a couple of months earlier. It is a good thing we didn’t have any Christmas plans last year. Potter

9 months ago

Hey @heartland. I had my initial launch into the world of MS 18 months ago wi5 no previous. Then only recently, I realised that I had Lhermitte’s sign 19 years ago, which was of no real relevance and lasted 6 weeks. My neuro. Told me last week that it was most likely my first and only prior symptom. Hopefully, the long pause for you is a good sign. Always expect the unexpected with this little gem of a condition! All the best

9 months ago

Since my first symptom in 1989 I have never had a relapse. Officially diagnosed in Japan in 2007. My MS has steadily gotten worse over the years. Take Care.

9 months ago

Thanks to all for their replies. It certainly is a mysterious condition, with everyone presenting differently both in terms of time and symptoms.

My initial MRI was brain only, next week is both brain and spine. I just thought the exceptionally long time of 12 yrs was unusual. Openminded did you have any symptoms between 1989 and 2007? What happened in 2007 for you to be diagnosed then?

Potter no symptoms for 10 yrs?

9 months ago

@heartland…yes totally mysterious and really no answers as to why or how .
I had two episodes when I was 17 ..the first mild and three months later one really extreme involving total sudden paralysis ..complete recovery
Then went over 45 years with absolutely yes no symptoms for me for 45 years! ..but in the past few years I have had problems walking and now apparently have morphed to SPMS
Very difficult for researchers to get to grips with so many variables .

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