Hi all,
as the title suggests I’m new to MS having only been diagnosed 21/06/22. I also have Chronic myeloid leukaemia (CML) that was diagnosed in 2017.
I was taking a drug called Imatinib for my CML and after a few years started to develop really bad cramps that became more frequent, easily 50-100 times a day and some lasting 20-30 minutes and have even caused me to pass out with the pain. I have had these type of cramps in my calfs, shins, back, neck and even in my tongue to the point of choking on it whilst vomiting. The cramps were so painful that it would take a few hours or days to recover from the bad ones causing me to regularly use a walking stick to aid with walking until it settled.
Alongside the cramps I would also have violent, tense spasms whilst in bed. I would wake up and try to move my leg or arm and my whole body would just tense up to the point of flapping around like a fish out of water. This would only last for around 3-5 seconds but it really took it out of me.
I also developed a feeling in my right leg like a burning or a freezing sensation, it is still hard to decide although I have to sleep with my feet out of the bed to cool them so i’m assuming its a hot sensation
Anyway long story short… because of my symptoms I changed my CML meds and now have very little cramps but the other symptoms led to me being sent to see a neurologist who carried out all the normal physical tests and x2 MRI scans.
The scans confirmed I have Cervical constriction on my spinal cord and quite a few scars on my spinal cord resulting in secondary progressive MS, and between the hospital visits the leg feeling is also now numb with weakness that has led to me tripping over my own foot a few times? I also have pain, numbness and pins and needles in my right arm and shoulder probably caused by the spinal cord being compressed.
Obviously the MS was a bit of a shock and even more so for my wife who works in a care home and has cared for residents that have MS. Im just wondering if anyone on here also has CML or another cancer and MS and if they have any additional problems, issues although I know everyone is different.
I have alway been a positive person and nothing really gets me down and having MS is just another fight to add to the rest. I have a few saying that I live by that keeps me on top of things… Ne bother, I’m Fine, It’ll be reet, crack on. Yes Im from the Northeast of England another statement that I heard from someone else that is so true: You cant control the waves, but you can learn to surf!