Is it MS or not? Anyone with similar experience?

Hello all, I posted a few weeks ago regarding my recent diagnois of MS. I today attended by GP for another matter and we spoke about my time at the hospital. She informed me that they received a letter from the hospital but had NOT given a definitive diagnois OF MS even though I was told at the hospital that was what they found. They did not say “we suspect MS” they said I had it. I had been gone on to ask of could still have kids etc and they answered all questions. My GP has said that until a neurologist confirms MS they can’t update my medical record. I also received a letter about getting the flu jab the other day so I assumed this was to do with the diagnosis as I’ve never had the flu jab in my life. They issues with the low pressure in my spine still remains a mystery and the GP said they would still have to do further tests. As if I wasn’t anxious enough and now this. Obviously it would be great if it wasn’t MS but I don’t understand why they said it but the letter says otherwise. Anyone had similar experience? Thank you, Louise

Hello Louise

That’s odd.

Normally every time a hospital consultant sends a letter to my GP, I get a copy. Have you received a copy of the letter sent to your GP?

If not, phone your neurologists secretary and ask for a copy. And while you’re at it, you could ask him/her about this mixed message.

I agree with you about the flu jab. You wouldn’t normally be offered it unless you have a condition that suggests it’s a good idea. Or are a pensioner (you’re not are you?)

What did the doctor say was in the letter sent by the neurologist anyway? Or haven’t they had one?


Hi Sue, I did reply but the website went down so if I reply twice that’s the reason! No, I’m only 34. I have not received a copy of the letter, I am in Scotland so not sure if it’s different here! They say they have not confirmed MS but cebreral white matter was found on the brain mri but they were still inconclusive about the opening low pressure from the lumbar puncture. They said they would test further. Really quite anxious now. Thanks, Louise