trailcml
New member
- Joined
- Sep 5, 2022
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- MA
Hi, I have been on a drug called imatinib for chronic myeloid leukemia for 7 years now. My response was good but the fatigue was hard. So, 2 months ago we switched to dasatinib (a 2nd generation drug to fight CML). About 2 weeks ago, I started feeling tingly and numb feet and hands with a burning sensation in my lower cervical spine. In the last couple of days I've noticed these muscle fluctuations in my calves and the pace has picked up. Whereas I didn't notice them before I can now feel the "pulse" when it happens. My legs are getting progressively weaker going up to my knees and I feel a little wobbly when walking. I'm still strong enough to do any and all tasks but the numbness and tinglys in my feet/hands, burning sensation in neck, muscle flutters and neck popping when I move my heads is making me concerned about ALS. I'm also feeling fevery with periods of being cold, then clammy sweaty hands. My temp seems to be fine though. It seems to be progressing much faster than what I've read but I don't know.
On the advice on my hematologist, I've stopped taking dasatiinib on the rare shot this is related to a peripheral neuropathy. It's been 3 days now and I see him in 4 more days. I'm also trying to line up a neurologist after spending the night in the ER a couple nights back to rule out any stroke (family history), heart attach and spine issues. I had a CT scan on my spine and head with contrast but that didn't show anything. My bloodwork all came back normal albeit slightly anemic (HGB, HCT and RDW all slightly low). My thyroid TSH was high, but T4 was fine.
Would love to hear from others out there. I'm worried. My wife is telling me to be positive and I'm working hard to do so.
On the advice on my hematologist, I've stopped taking dasatiinib on the rare shot this is related to a peripheral neuropathy. It's been 3 days now and I see him in 4 more days. I'm also trying to line up a neurologist after spending the night in the ER a couple nights back to rule out any stroke (family history), heart attach and spine issues. I had a CT scan on my spine and head with contrast but that didn't show anything. My bloodwork all came back normal albeit slightly anemic (HGB, HCT and RDW all slightly low). My thyroid TSH was high, but T4 was fine.
Would love to hear from others out there. I'm worried. My wife is telling me to be positive and I'm working hard to do so.