I was diagnosed with CIS on 21st August and given a number to phone to speak to an MS nurse if I had further symptoms. I was also told I will be sent for a second MRI in 6 months Less than a week after this appointment I got more numbness, pins and needles, head aches, eye pain and crippling fatigue. After a little over a week of symptoms I phoned the number to discover there were no MS nurses available and my appointment would not be brought forward due to an 18 month waiting list. After some tears on the phone I was told an MS nurse wouls phone me back. They haven’t. That was a week ago. I was also told that my second MRI would be 6 months from my first one, which was in June. I have just received the referral letter today and it says 6 months from the consultant appointment, which was August. I can’t wait until February. I’ve left messages and no one’s getting back to me. How is this phone number meant to be any use? Thankfully my energy levels have picked up again after 2 weeks of not being able to do anything, work or look after my 5 year old. I’m feeling very disheartened. What would you do? Thanks Sorry for moaning.
i would put it in writing to the hospital where your neuro is based. if you don’t get a satisfactory response you can write to PALS (patient advice and liaison services). we know that the NHS is overstretched but it is your health at stake here.