Hi,im writing this in the hope i can chat to someone or group in my area of keighley,west yorkshire.After years of been told i had depression,fibromyalgia,ect,ect,i was diagnosed 18mnths ago by oliver lilly that i had m.s.relieved in a way to be able to give a name to all those strange symptoms that i had experienced for years.I now see a dr at airedale hospital approx every 8mnths,im not on medication,and feel sometimes im left to go it alone and to get most info from web sites,so it would be helpful for me to be able to chat to other people in my position.
hi leeds lady
i have read in ms matters that everybody with a new diagnosis of ms should be offered a dmd (disease modifying drug).
i would chase this up with your consultant.
it’s a strange old world where you feel relief at being diagnosed with an incurable illness but i did!
Hi leeds lady,
I can really identify with your journey. I dont have a dx as yet but have asked my GP to refer me to see Lily at the spire in Leeds. I have lots of odd symptoms which have been going on for a number of years and Airedale neuro was unable to find anything a miss with me.I also have M.E and fibro diagnosis.
Did it come as a relief when you finally got some answeres?
im from Leeds and go to the West Yorkshire MS Therapy centre in Leeds (www.mstherapy.org.uk). Also on Facebook & Twitter.
They offer a range of therapies and it’s a great place to meet other msers for a chat .
give them a ring and ask for Joanne to arrange a visit
Hi Chris. I`m in Elland, near Halifax.
I tried to get a referral to Dr Lily,but he didnt wish to see me just recommended a 2nd LP.
Hope your doing the best you can hun.
Hi leeds lady i live in Bramley in leeds i to have had lots if weird things happen to me i had the ms dx 3 times and then told it wasnt again so at the minute i am in limbo yet again.
Discharged from the neuros with no support from anyone i am just left to go it alone.
its a lonely place being in limbo, good to hear you finally got to the bottom of whats been happening to you.
All the best Barbara.xx
Hi Barbara, I hate it when folk are discharged, but it is obvious summat’s chuffin wrong!
What are your symptoms?
Like you, I was wrongly diagnosed with MS.
Has HSP been mentioned to you?
It’s what I have… They think!!
I can sympathise with your predicament. It is unfortunate to be in the West Yorkshire treatment area and the only neurologists who can prescribe are at the Leeds centre. Is there not an MS nurse at Airedale who can support you to let you know what’s what?
It is not OK to be left waiting for treatment for 18 months after diagnosis. Things have changed in the protocol from NICE and also in drugs available since you were diagnosed. You can ask your GP for a referral back to Leeds and try to be taken on by the treatment programme there. If you are still not happy - there are treatment prescribers at Sheffield and Manchester.
I find there is a lack of urgency and as “you are not so bad wait and see” attitude which is not the current thinking.