An interesting few days... Four or five days ago, with what I thought (and still suspect) are peripheral neuropathy symptoms, my walking became as bad as it's ever been. Getting out of a chair is a real struggle, and I can't even cross a room without a stick for stability. In the early stages of this I emailed Dr.Ch to ask if I should seek an appointment with my GP or wait until our next (phone) consultation on the 17th. Unfortunately I didn't get a reply and on Wednesday 12th booked a GP appointment for the afternoon (and after a Specsavers eye test in the morning). Not quite sure what magic button I pressed to get a face-to-face so quickly apart from emphasising that I'm a blood cancer patient, but it worked.
He said he didn't know anything about PN except in the context of diabetes - honest, if not exactly helpful.Instead he concentrated on the muscle weakness "in all the diodes down my left hand side" as Marvin the Paranoid Android wold have put it. He raised the possibility of a mini-stroke and sent me off to A&E with a letter to get it checked out. I had a CT scan and bloods to check for infections, and the stroke consultant and his colleagues seemed convinced by the mini-stroke idea. They kept me in for an MRI and Doppler ultrasound next day. I approached the MRI with some trepidation as I had to abort the last one for a combination of unexpected claustrophobia and inability to suppress my neck twitches. The new machine is much better - the tunnel is wider and shorter, the hammering sound is still there but softer easier to stand, and there are visuals to look at. I got a South Seas beach scene with palm trees and coconuts falling off them to watch and count.
When the report came in a few hours later they had found no trace of a stroke and decided to put all the blame on side-effects of Lenalidomide. Luckily I'm on my week off Len but I had a message from my haematologist saying don't take any more Lenalidomide! He will be reviewing my case over the next few days before the next consultation on the 17th,
I'm hoping for improvement but little sign of it yet. Still a lot of numbness in my left hand, walking very slow and unstable, and getting out of chairs is a real struggle.
Glad that the stroke has been ruled out! I guess it's a case of the least worst diagnosis being reassuring to some degree.
ReplyDeleteSo no connection to the 4th covid jab, how close were your 3rd and 4th jabs? Husband about to have his 3rd and then 4th after that,
ReplyDeleteNo connection. This started before I had #4
ReplyDeleteWhen did you have your third jab, my husband is about to have his 3rd and is curious about the gap between 3rd and 4th jab in UK,
ReplyDelete#3 was on October 10,#4 on JAn 11. Twelve weeks is the minimum gap.
DeleteThank you for that
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ReplyDeleteI am currently 72 years old and I was first diagnosed about 19 years ago by my gp. My memory is vague on this because of what has happened over the years. My hematologist in Vancouver put me on a regimen to preserve my bones and delay my chemo/stem cell treatment. Then it became clear one day due to extreme weakness that my time had come. So full court press on blood boosters, Dex, the full on nuclear bomb of chemo. Usual hair loss, weight loss, weakness...pretty typical. Had a year respite because of this. Gathered my strength. Doc then put me on the hated Dexamethasone. My wife followed a blog by an American woman in Venice called Margaret. She followed a regimen of high dosage Circumin, monitored her blood and was living a close to normal life. So after a year of Dex and all the dreaded weaknesses and accompanying grief, in discussion with my doctor, I said f*ck it to Dex and went on Margaret's Circumin regimen. Best thing I ever did. I now live a pretty normal life. I hike in the mountains. I travel. I drink alcohol. I am not suggesting anyone ditch their doctor's advice, but a discussion of this might help. I believe their is an English study of Circumin in which a MM patient was treated with it as a Hail Mary and if saved her life. I saw the study years ago, but you would have to look for it. But, for me, living with Dex was making my life a living hell. So it was an easy decision to damn the torpedoes and move on. I am more than willing to share more of my story if you are interested. I know there are no magic bullets and many kinds of Myeloma and no one size fits all. But if my experience can help, please just reach out.
ReplyDeleteBTW, I believe I got MM by high dose radiation.
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