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Help please

Hello my problem I’m sure is not unusual. I was diagnosed on 25th April with progressive phenotype , I was told by my neurologist that I will be discharged and he would send an urgent referral to the multiple sclerosis team . I was prescribed a infusion of vit d and told I would be seen in about 6 weeks by ms consultant. Anyway I haven’t heard a thing as of today and called my neurologists Secretary who has informed me that I would be lucky if I get an appointment by the end of the year. I am worse and my symptoms are now scaring me . My short term memory is some days awful and my pain is too . Iam weaker than I was and a couple of times ive had difficulty swallowing my food . I can’t believe that I really have to wait till the end of the year to begin treatment. Thank you karen

Hello

Welcome to the forum. I’m sure it’s a place you never wanted to be welcomed to.

The big problem with Progressive types of MS is that there isn’t much in the way of treatments. The only disease modifying drug (DMD) for Primary Progressive is Ocrevus. See https://www.mstrust.org.uk/a-z/ocrevus-ocrelizumab The problem with it is that it’s not massively effective for PPMS. And like all drugs, there are potential side effects.

Waiting until the end of the year before you get to see an MS specialist seems utterly wrong. You could approach your hospitals Patient Advice and Liaison Service (PALS) to see if they can help speed up your appointment.

Perhaps you’ll get an appointment with an MS nurse sooner?

Having been diagnosed with MS of any type is scary and upsetting. It will probably take some time for your emotions to settle. Let us know if we can help at all.

Sue