Curious about the pattern of relapses in RRMS

Everyday living
1

Hi, I am not diagnosed as MS yet although I have a tentative “Clinically Isolated Incident” diagnosis from 2013.

I would like to know more about the pattern of relapses in others so I know how many relapses I might have had myself.

In 2009 - while training for a marathon I had a lot of neurological issues while training for the race - visual snow, vision loss and blurring, also a lot of tingling but these were always while running and I thought it normal. During the race I had some nerve pain in a private area which I had to go lie down in an ambulance for a while for it to pass and after the race I had a headache lasting 6 weeks.

In 2012/13 I had a lot of nerve stabbing pain in my chest and visited A&E twice for it as it was a very high pain level. It was paroxymal and lasted just a second at a time but kept attacking, lasted for 6 weeks.

Later in 2013 I had a neurological episode, my face which had been drooping slightly for 1 year then started drooping a lot more. Also I had a lot of tingling, numbness in face and upper body, parasthesia and visual issues similar to before. This was investigated and brain MRI was clear. so was called a clinically isolated incident lasting 6 weeks.

In 2014 I had another attack of nerve pain in chest and fingers, but no other neurological symptoms occured with it so I never thought this was a neuro episode/relapse.

In 2016 and 2017 I had bad headaches that would last 1-8 weeks at a time during the spring and summer however these are being called tension headaches. I had no other neuro symptoms during these.

This year I had a very similar attack to 2013, facial drooping and tingling, numbness in upper body and face. Months prior to this I had the same ‘teeth tingling’ only when I exercised which was constant during this attack. This time I also had some incontincy issues too and it started with a very bad headache. Due to the symptoms I again worried about MS and saw a (useless) neuro.

I am hoping to get a spinal MRI to rule out MS completely but until then, just looking at my symptoms and history does it seem like these are all relapses? Or does MS always collect up the previous symptoms when it attacks? and the chest pain and headaches must be something else?

Thank you for your time and patience in reading this

Vickie

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Sorry if this sounds blunt, but in brief, please don’t self diagnose, wait for a proper outcome from a suitably qualified doctor, and then I’m afraid, there is no set pattern. You will, or will not, get what you get and then it’s all about coming to terms with things. It is crucial to speak to the right people, which I assume you are doing as you mention Mri. If not, go see your gp and try and get a referral to an ms specialist

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Ok thanks, unfortunately I didn’t go to an ms specialist. I showed two different neurologists a list like the above, one said ‘it’s not normal but there’s nothing we can do’ the other said ‘these are all normal symptoms that everybody has’

I am trying to get a third opinion with ms specialist but unfortunately I had to pay. That will be in June so I won’t have long to wait.

Thanks for letting me know though there is no set pattern and your advice for seeing a specialst :slight_smile:

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I had a real episode 2000 when i went blind and then from then on had periods of more odd things going on. Before 2000 i was also having weird things but well just tried to ignore them.

IF you had MS I would think you would have taken a long time to recover from each episode. A relapse will suddenly hit you over a few days, and can you knock you down for six (months even).

It took me 10 years to get diagnosed. Its a long haul but it was seeing a neurologist privately that was the best thing i did.

What you describe can be even over training.

I hope you get somewhere with your new neurologist. Something odd is obviously going on. Look at other things even Lymes can have your symptoms.

You wont get diagnosed just because you have a lesion on your spine believe me. x