What was your first symptoms of MS?

[GuitarRox]

What was your first symptom of MS and how long did it take you to get a true diagnosis from there?

[LQQKIT]

In 2000 my toothbrush fell out of hand while brushing teeth as hand could not hold it.  Went to ER and saw several neurologists thereafter and took awhile for MS to come up as they had to rule out Lyme's disease, etc. and I refused spinal tap.  MRI showed lesions but then had to get a pacemaker for unrelated reason a year or so later and can no longer have MRI's to show progression of lesions.  Went on Avonex injections approximately 3 years then stopped as was tired of being sick every weekend following the injection.  Have not had many issues until now (20 years later) and feet and hands recently stopped working properly (can still walk but barely) but am very very depressed crying everyday.  Having cognitive issues and Lemittes and been told to start Tysabri.  Is tough when your the breadwinner and was taken off work last week.  I knew something was wrong when I stopped smoking in March and thought my overall health should improve but actually got worse.

[LATW]

My first symptom was ON and I was diagnosed 9 months later. I had ON, one old lesion, one new lesion, and 14 O Bands. I have done pretty well physically since my diagnosis 11 years ago. My vision has gotten a lot worse in my ON eye and I am losing my ability to see blue colors well. I have been on Tysabri for more than 5 years now. Still JCV negative.

[Skibum1958]

My first symptom was difficulty urinating/retention.  Shortly thereafter I had a major bout and was on a ventilator etc.  time from first symptom to diagnosis was 9  months.  I was diagnosed in 1982.

[supermum_ms]

Hi and welcome,

I'm curios, how you were diagnosed in the early 80's, back then it was before the first version of the MS Mcdonald diagnostic criteria was created and MRI's were still very new to diagnose, the first time an MRI was used to dx MS was only in 81....it would be very interesting to hear about your initial diagnostic story and how much has changed after almost 30 years of MRI's  :D

Cheers....JJ

[Skibum1958]

Way back when..in 1982 they did things the slow painful way.  However they may the diagnosis based on: (1) BSER, VER and spinal tap results:  I hade elevated Igg synthesis rate.  They also were able to link near deficits to lesion is space and time.

Back then they sill used to do cervical myelograms...really bad time.

MRI's were not available until the later 80's.

TG

[supermum_ms]

A first symptom for one pwMS may never be experienced by someone else, no 2 pwMS are the same, MS is also refereed to as the snowflake disease, basically what symptoms you have depends on where the MS lesions develop, what type of MS you have, your age, gender etc....

Optic Neuritis (ON) is one of the more obvious early-first symptom probably because it's not as vague as symptoms like numbness or tingling, fatigue etc about 20% of pwMS recognise ON as their first symptom that lead to being dx-ed with MS but to complicate matters not everyone who has optic neuritis will actually have or then develop MS.

The average time from first symptoms to diagnosis is suppose to be around 4.6 years for the under 50, over's is 3.2 years but there is no specific expectation of time frame. In one research study i read the most common first symptoms in the older age group are sensory and cerebellar symptoms with optic neuritis being the most common in the general adult onset group.

Hope that helps...JJ