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New and not just MS

Hi All, I'm new to this forum and glad I've found it as there are many others out there with very little activity. Anyway as the title suggests... I have Primary Progressive MS that was diagnosed in late 2022. However, I also have CML which is Chronic Myeloid Leukaemia which was diagnosed in 2017, I also have cervical stenosis. Ironically it seems I am 1 of only 3 people in the world to be diagnosed with both PPMS and CML making treatments and diagnosis a little more difficult. So, symptoms that led to my MS diagnosis first started around 2018 when I was getting numbness in my lower right leg. This then led to my foot feeling really cold although the feeling was the complete opposite once I got into bed my foot then felt like it was on fire. The problem persisted and gradually got worse with a complete loss of touch sensation below the knee and the cold/hot sensation getting more extreme. At this point, the GP was still unsure and carried out the usual pinprick and Doppler testing to check for poor circulation. As things got worse I started acquiring "foot drop" so when I lifted my leg my foot would not lift correctly, leading to a number of falls and me tripping over my own foot "Clown Like". I am not on any medication for my MS, just medication to deal with the symptoms. The biggest problem is that I ache and have pain all day every day but can't pinpoint the cause... is it the MS, the CML or the Cervical Stenosis that is nipping my spinal cord? Anyway, that's enough for my first post. Thanks.

Hello and welcome - I too have PPMS - diagnosed over a year ago. I receive Ocrevus - but find lately that some exercises actually seem to help more than anything. I wish you well.


@GerardMcC1 Thanks for the well-wish. I struggle with exercise at the moment due to the foot drop/limp and my leg calliper that is now needed to support my foot along with a weight-bearing crutch. All on top of the usual fatigue and pain. Although I have been getting some seated exercise from my physio which helps. The lower leg problem is starting to creep to my left leg now with the same freezing feet and burning sensation in bed although I still have some touch sensation so hopefully this will hold back for a while. Thanks