Well, so here goes. Back in September I had an episode of optic neuritis. Been having pins & needles for longer than I care to remember, sometimes numb leg up to knee, usually these happened on waking in the morning or woke me up. Also have had sudden sharp shooting pains in base of left palm and had episodes of head feeling like someone just put expanding foam into it!! I had MRI in December and saw neurologist on 22nd March. She said there was areas of inflamation near to the centre of brain and other white spots that could be age related. Could be caused by virus. She said she didn’t think it was MS but couldn’t categorically say it wasn’t . She said all reflexes and tests she did there and then we’re all ok. Waiting on second scan with contrast - Tuesday 26th March. I came away from appointment feeling relieved and optimistic.
Here’s the thing - when I got copy of letter to my GP detailing appointment it said - At least 20 lesions identified that look of different age, that I could qualify for McDonald Criteria of demylination. At least 2 episodes of neurological symptoms, (I kept a diary which I gave to her of symptoms) Subtle sensory loss in left lower limb with reduced vibration sense and both planters were down going. This might fulfil MacDonald criteria for diagnosis of MS. It then went into various drug therapies and further review to be with specialist ME Nurse. Reading the letter sounds more like it could be MS and feels very different to what was said ?.?..? Any advise ???
Hi, I cant offer any advice Im afraid but just wanted to say Im in a similar position. My 2nd MRI is on the 27th March, my first was just of my neck for what my GP thought was a trapped nerve and shown one area of inflammation, so the mention of MS has come as a bit of a shock. Next Wednesdays is my head and full spine. I also got the impression my reflex and balance tests were all fine and left the Neurologists feeling optimistic and relieved too. I received a cpy of the letter to my GP and its all a bit gobbley gook and doesnt mean an awful lot to me so its just a waiting game now.
Im sorry my reply isnt helpful but what I really wanted to say was good luck for next week, I really hope everything goes well for you x
Thank you. Most days I’m fine and just try to forget it . I’m the first to tell anyone, don’t stress over things you don’t know yet, cross that bridge when you get to it ! But I do have odd days where I just feel like crying !! Deep breath - hopefully I won’t wait too long to see neurologist after next scan. May be facing a lumber puncture also. Good luck with your appointments also. X
Hello Trix
It sounds very peculiar, to have the same neurologist tell you it’s not MS, then seem to imply quite the reverse in a letter. Weird.
At least you’ve not got long to wait until your next MRI, and that will hopefully give more definitive answers. You should definitely ask the neurologist next time you see her why she gave two contradictory reports. But then I suppose you should be relying more on the written report than the verbal.
It could be that after she saw you, she then reviewed the evidence of the MRI and your physical examination plus symptoms indicated that MS was more likely than not.
If you are likely to see the MS nurse sooner than you see the neurologist again, you could go through all of this with him/her and see what their opinion is.
Best of luck
Sue