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Anyone else where I am?

Hi all not sure where to start… Guess the beginning would be best so here goes, around 2 weeks ago I started faith numbness in my left side, started in my toes eventually worked its way up till my whole left side was numb I went to the gp who said he was referring me to the TIA clinic had the appointment there 2 days later, the neurologist told me that it was def not a TIA and did some basic tests like scraping my feet, reflex tests,touching my nose walking in a straight line etc, also my face has dropped slightly on the left which seems to get worse throughout the day…since then I have started getting tingling in my right side a whoosh tingling feeling when I put my head to my chin…my sense of taste seems to disappear on and off too. When I had the app with the neurologist he said he could give me a course of 500mg steroids for 5 days but if it was ok with me he would like to wait so that the inflammation would be visible on the Mri which is fine with me as I’m not in pain…when I asked him if he thought it could be Ms he replied with a flat yes not a yes but it could be several other things just a yes. I’m 31 a single mum with a 4 and 2 year old so am quite worried what this will me for us, has anyone else experienced what I’m and what was your outcome? Sorry for the long post!!! Any reply would be greatly appreciated!! Thanks

Oh crumbs, that is all quite a shock to your system. You must be reeling with it all.

Most of us who have an MS dx can remember very vividly being where you are now, and it isn’t a great place to be. If/when you get your formal MS dx, that won’t be good news, obviously. All I can say is that most of us find a way of dealing with whatever comes along and making a good life for ourselves despite MS, and so would you.

Hang on in there.

Alison

Thanks Alison do you think it sounds like Ms? X

For what it’s worth (which isn’t much - beware the pitfalls of assuming that someone who sounds as though they have similar symptoms has the same condition) there are aspects of your description that certainly sound familiar. Gemma, I’m afraid that it is only your specialist who can comment with authority on your situation.

Alison

So it’s my MRI tomorrow, will I get to see any of the images? X

Gemma, when you next visit your neuro he should have your MRI results, so you will see it & hopefully it’ll be explained to you. Don’t be afraid to ask questions, perhaps make a list.

Might be a good idea to ring neuro’s secretary before the appointment, just to make sure he/she has the results in front of them for your visit…sometimes things do go astray!

Good luck

Rosina x

Well it’s results appointment tomorrow I’m feeling very nervous x

Good Luck for tomorrow Gemma, hope you get some answers.

Snowqueen

Mir has shown some lesions on my brain and spine, bloods taken today and back for a lumbar puncture on weds. How bad is the pain from one of these? What are the after effects? Also I have started wiith horrible pain in my lower back is this normal? Sorry for all the questions x

Hi Gemma,

My LP was very recent 27th March & I let others stress me out before I had it. There are lots of people with negative experiences of them however…

They use atraumatic needles now so side effects are small and less frequent. I had no issues with mine got straight up slowly when it was done and was in costa coffee at the hospital 5mins later :slight_smile: They do recommend you drink caffeine afterwards and I would say take it easy afterwards for a couple of days.

I get bad neck ache & headache which I’m now having massage for, pain killer tablets don’t work. I get lower back pain but related to my walking strange I think.

Hope all goes ok on Wednesday.

Snowqueen x

Thank you for your reply snow queen are you undiagnosed like me? Are you still waiting for the results from lp? Xx

I was diagnosed with MS on the 11th March post MRI based on clinical exam, history and MRI. LP was just to confirm 100% and was positive for O Bands. Got the result a week after the LP but that was quick and because I had already been told I had MS.

Snowqueen

Hi Gemma,

How did the LP go?

Snowqueen

Hi snow queen it was honestly one of the worst things I have ever experienced! And I e given birth twice! I have headache and backache at the mo but that’s to be expected, at least it’s over and done with now…I start steroids tomorrow 500mg of prednisone ( not sure on spelling) have you had these? Is there any effects I should be concerned about? Xx

Hi Gemma,

Sorry to hear your LP was a bad experience, drink some caffeine as I have been told that helps the head and backache. At least like u said that’s another box ticked. Hope you don’t have to wait long for the result. Re Steroids no sadly my MS does not qualify for treatments as it looks like it’s progressive, have my fingers crossed big time for remission, had my symptoms since July since when they have steadily worsened. There will be someone here though who has had steroids. Good Luck with them.

Snowqueen x

Sorry to hear that! Hope and pray remissions starts for you asap x