Last reply 1 month ago
Symptoms before diagnosis how long?

My doctor told me that I have dormant multiple sclerosis meaning that I have the gray areas in my head and most of the symptoms but not the bands in my spine. My question is : is it normal to have symptoms for years before a real diagnosis? My dr told me that dormant ms isn’t a real diagnosis. So as you all can imagine I am a little bit confused. Just wondering. Any suggestions or advice will be good thanks

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thorpee
1 month ago

I’m no expert but how could he say it was dormant with nothing to compare it to. Also if you are feeling symptoms it is hardly dormant. I got diagnosed recently after going to the doctors a few years back with a painless limp. I didn’t think I had other symptoms but the more I read about this I am convinced I’ve had this for quite a few more years than I than I realised. In the letter from the neurologist diagnosing it he says the likely onset was 2016 – I now think I had symptoms as far back as 2007. Only little things which I largely ignored or thought “that was weird” and carried on.


dalebrooks
1 month ago

He said it was dormant because they found grey lesions on my brain but nothing in my spinal fluid with the lumbar puncture I had.


janabananaaa
1 month ago

About 6 years ago I got diagnosed with ADEM which is basically a one off ms thing. They didn’t find anything in my spinal fluid either, however I had ongoing symptoms which I ignored but was hospitalised and diagnosed With MS 2 years later.

It can be very unpredictable and everyone seems to be a little different. I hope all goes well!! X


itsmewithms
1 month ago

I think I saw that the average is 4.5 years before diagnosis. I would have to say that the first time I went in with symptoms that could have led to diagnosis (drop foot) was likely that long but only weeks once I got in to a good neurologist with a MS specialty and MRIs.

It was recently active and I had many lesions so was put on a DMT immediately (copaxone as t his was 2005 when there weren’t many options).


dalebrooks
1 month ago

Thank you all so much. I’m thinking about switching my neurologist maybe that’s the right thing to do.


dalebrooks
1 month ago

Thank you all so much. Maybe I need to look into getting a new neurologist. At least maybe a second opinion.


dalebrooks
1 month ago

Sorry my silly computer sometimes it does one thing and acts like it didn’t do it at all

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