Last reply 1 month ago
Two year wait?

Saw an MS nurse today. Only the second time I have been and was diagnosed in January. She asked me if I had any questions and I explained that the diagnosis didn’t come as a big shock as I have been steadily struggling slowly over the past 12 months. I was very active and strong before that and little by little I am getting worse. I asked her about any medication I could take and she said I had to meet certain criteria. This criteria is that I log my symptoms over two years and then they can work out which form I have and then decide which medication would be helpful. Am I being dramatic thinking that this is scary as so much has changed for me over 12 months that another two years will mean I am even less capable than I am now?

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highlander
1 month ago

@jo_buckland
Hi there do you live and what type of MS were you diagnosed with.
If you’re in the states find another Numerologists asap.
If you’re in the UK change your hospital or call the PALS department in your local hospital…..
I’m sure you’ll get loads more advice soon, but your location would help us direct you better.


jo_buckland
1 month ago

Hi @highlander
I’m in Wales, UK. I’ve asked which type of MS I have but they said that it takes a year or so of logging symptoms before they can tell me? I haven’t got a consultant yet as far as I know but as my speech has deteriorated so much over the past few months the nurse said she would refer me to one. I have no idea if I am expecting too much or not enough?!


highlander
1 month ago

@stumbler (he has more knowledge than me)
Sorry I’m guessing, but have you been formally told you have MS by a neurologist
With MRI and spinal tap.


jo_buckland
1 month ago

@highlander yes. I haven’t been able to use my right hand for about 10 years and was being treated for dystonia but the neurologist who was dealing with it requested an MRI which showed MS and confirmed it with a lumbar puncture. He then said he would transfer me to another neurologist as he didn’t treat MS


stumbler
1 month ago

@jo_buckland , you seem to have fallen through the “notorious” MS cracks. Were you ever seen by the “neurologist who does deal with MS”?

You may want to familiarise yourself with the NICE guidance for dealing with potential MS and MS cases :-

https://www.nice.org.uk/guidance/cg186

This sets out what you should expect from the NHS. But do have a word with PALS to review your medical records and see if and where things may have gone wrong. And how to get things back on track.


jo_buckland
1 month ago

Thank you @stumbler that will be really helpful!


wjgregg
1 month ago

Dear @jo_buckland,

I hope that you can finally make some progress, and move things along. I have found that the N.H.S. has worked very well for me (eventually) after a couple of false starts. It sometimes takes perseverance, but when it all comes together, i’m Sure you’ll be glad it’s there for you. We are lucky, here in the U.K., that we still have it.

Good luck, and best wishes.

Jon

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