Progressive ms, I can’t get much help as my lesions are un active, in a lot of pain, can only get antidepressants and that’s it my neurologist won’t do anything, my ms nurse warned me about the danger of pml with taking the ms drugs feel so hopeless and can only do diet but it could take years and then, that’s if it works, is anyone similar to me would love to hear from you or has anyone tried the ms diets with good results!
Hi, my amitriptyline helps keep most of my nerve pain away…50mg at night. I have had PPMS for 25 years.
Boudsx
Hi Marcy
I’m in a similar situation to you - PPMS with NEIDA, so MS Consultant says I don’t qualify for ocrelizumab. I have Baclofen for muscle spasms and that’s it as I can’t tolerate the -triptyline type drugs as they turn me into a zombie.
I’ve found that the trigger words are “Treatment Plan”. The likes of us don’t have one, so we just get tossed over the side. Try writing (so it’s a documented request) to your MS Team / Consultant and ask for a treatment plan. Particularly if you are willing to be considered for clinical trials or studies. If you ask, they would be negligent to ignore it, so will at least have a look.
Asking for a treatment plan got them considering me for Sativex which is CBD based. My NHS Trust doesn’t offer it so they are looking at if I can be referred for it.
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