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How often do people have relapses?

Silly question as I’m undiagnosed but I guess what made me think of it was writing my notes for the second opnion I have on wednesday.

Looking back I had:

  • March 11: stiff L leg
  • July 11: L neck spasm
  • Aug 11: L neck spasm with tingling in fingers then pain in band around wrist with hand feeling cold.
  • Oct 11: My big flare up with parasthesia and numbness on L bladder and bowel issues
  • April 12: Hug on L side of chest with reflare of parasthesia
  • May 12: ? TN
  • July 12: Reflare of old symptoms after whooping cough as well new R sided parasthesia and ? hug around L side of abdomen with burning pain.

I didn’t realise how much had happened till actually I looked at it like this on a peice of paper. I tend to feel better after I get an episode of things I mean after my big one in oct before I got the hug I felt good just some mininimal symptoms I almost thought it might all just be ok and nothing new would ever happen and then it hit me.

I guess it just made me wonder.

Reemz

X

I tend to have years with no relapses or years with 4 or 5 which can last anything from a couple of days to four months or so. April 2010 - April 2011 was either 5 back to back relapses or 1 big long one.

It likes to keep us guessing, MS.

Karen x

I guess 1 shoe doesn’t fit all hey - I always thought with RRMS it was 1-2 relapses a year.

My body certianly seems to have been up and down and all over the place particulalry since April this year. No point over thinking though - have to wait and hopeuflly the neuro this wednesday will be able to shed some light.

Thanks

Reemz

X

Hi I think my first episode was two years ago when i had a numb tongue in Feb 10 it lasted a few weeks, disappeared for two weeks (ish) then came back for a few weeks before going. My second episode happened 14 months after with a stabbing pain in top of head in April 11 again it followed same pattern lasting a few weeks disappearing for a couple before coming and going again. My last episode started with ‘the hug’ in feb 12 lasted a few weeks disappeared for a couple of weeks came back again with worse symptoms like numb right side, wobbley legs and hand I could barely move etc and decided not to disappear so far, loads better than it was but writing is still difficult! Looking at other posts I don’t think there is a right or wrong amount of relapses in a year. I think you’ve just gotta cross your fingers and hope for the best!"…so fingers crossed for the future! Hope this helps the ‘wondering…’ Mish x

Hi Mish

Thank you so much for sharing. I know its no point over thinking and you’re right everyones MS is quiet different.

I went for a second opinion because I wanted help with symptoms and my neuro everytime I contacted him when something new happened patted me on the back and told me to get on with it with no help. I guess before what I really wanted was help and I wasn’t getting it.

Now seeing so much of whats happened on paper has made me realise I really do want answers and can’t contend with being brushed off because my symptoms are mild compared to a lot of people (what my first neuros attitude was). Seeing the number of issues I’ve tried to struggle with over the last 6 months has hit home that this is not something thats going to go away on its own whether it does end up being MS or something else.

So here’s hoping that the neuro I see on wednesday is more helpful and maybe I can finally get some answers.

Thanks again

Reemz

X

I was lucky i guess to get diagnosed so quickly. (thought first two episodes were trapped nerves!) my coordination was so severe by march my gp refered me for emergency two week appointment to see a neuro. I didn’t see neuro straight away but got sent for MRI within two weeks instead, followed by further appointment for spine. I didn’t see neuro until june so was beginning to think it would be something that would get better in time. I don’t know how others approached things but I took a clear list of symptoms and dates they happened. I gave it to neuro and gave her time to read it. She already had MRI results and did lots of physical tests too. She also had two students in which meant she explained things really clearly highlighting why some of my responses were significant. So I personally would recommend taking a clear list of events and symptoms to share as it will help you to not forget anything. You can wait so long for appointments you need to make sure you don’t forget anything that could be important…I nearly didn’t mention my numb tongue! Well i can feel myself jabbering. I hope this helps and you get some answers soon. It is so frustrating not knowing. Good luck. Mish x

I thought my neck and arm problems were trapped nerve too until I had my episode in October last year. Its unbelievable what some doctors are like - I work for the NHS and have never encountered such an uncaring doctor. I was almost in tears after the last 2 experiences with my first neuro.

Have my list prepped, the previous results of my MRI and blood tests from my first neuro with me too so hopefully I’m as prepared as I can get now. Fingers crossed.

Thanks Mish

Reemz

ps: I hate the god damn numb tongue, my lip on one side was also numb and I was forever misjudging and burning my mouth with tea!