Last reply 6 months ago
Don’t expect too much

Diagnosis PPMS August to December 2017
4 months to first consultant appointment
Paid £800 for brain ( with contrast ) scan, to speed up process wasn’t worth it as it then went back to nhs time scale
The next consultant appointment Is February 2019 Tea and sympathy?

Have had ms nurse appointments all very positive but nothing ever happens, they have put me through several types of drugs for pain relief, all have one common denominator, numb your senses and make you drowsy

Conclusion wrong side of 50
Don’t expect too much for PPMS! Treatment

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6 months ago

Unfortunately, there isn’t much for a Consultant to say when dealing with the progressive variants of MS. It is what it is and there are presently no treatments. Although this may change with the review of Ocrevus.

It’s all about symptom management. And when it comes to treatment for neuropathy, then yes, I’m afraid it is a case of numbing the pain to make it more comfortable. The medications can make you drowsy. This may be a short term side effect or it may need to be managed by adjusting the time you take the medication.

Having MS, at any age, is not a walk in the park, if you can manage a walk in the park. But, there are a lot of nastier things in this world that could have caused us more grief. Perspective is a good management tool. 😉

6 months ago

Hello @andrew4612. Yep, I get that it seems like that. My sister is in her 40s and was dx 2 years ago with PPMS and, though in London, she doesn’t have an MS service where she lives so she is transferring to my hospital. @stumbler is right, as time goes on, there will become more available for progressive types, so we’re on the edge of little and potentially greater breakthroughs. This thing sucks for sure. But this is a supportive community, so you’re not on your own…

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