Avascular Necrosis & Reynauds

[dzol]

I've had Reynauds since I was a teenager and about 2 years ago had difficulty breathing that took a year to diagnose as lack of blood flow to the heart. Medicine is fixing that currently but the lack of blood flow has now caused Avasular Necrosis in my left knee. My lateral femoral condyle collapsed on it self and caused a fracture on the surface of the bone. All of this by merely rolling over in bed. Has anyone had this type of progression over time?

[zenabb]

No. You have all my sympathy.

[dzol in reply to zenabb]

Thank You!

[kel55]

Hi dzol. I have Small Vessel Ischemia/disease, within this I get raynauds, MicroVascular disease and prinzemetal disease, all via spasms. In other words my vascular system as a funny and shuts down some part of my body? Primarily this effects my heart but it as also effected my brain (Tia/stroke symptoms) and pancreatitis symptoms nessitating the removal of my gall bladder. As for my 'skin layer' again it shuts down where it wants but mainly all the extremities, I'm also starting to get ulcers (rash) breakouts, I'm just rotting 😲. I take a lot of medication, nitrates, calcium blockers, potassium openers, ACE and paracetamol and codeine for the pain. My problem is if my vascular system shuts off in the right place and forgets to open up again, it's good night Lucy!

[annazfs in reply to kel55]

Hi kel55.I am sorry that you and everyone on this panel suffer with one or another health problem.I have been suffering with ischemic and micro circulation pro blem in my toes.I am diabetic.Doctors were about to amputate my toe a year ago.My second opinion with a vascular specialist saved my toe.He put me on blood thinner.At first it was diagnosed as blue toe syndrome where my toes get red then blue and plump ,then skin is very sensitive and peels off.i cant wear shoes and cant put too much pressure on my toes.I get these bouts 2-3times a year which lasts for 6-8weeks.My rhuematogist ruled out Raynauds phenomenon.Many Ct scans and Doppler tests were done.Clot was ruled out.Even here in US doctors make mistakes.Anyone has this condition??My doctor said "Dont fixate yourself on it"My toe tips are in pain.please help.thanks.

[dzol in reply to kel55]

Thanks for sharing. Without my I so sordid I'd be gone by now. If miss even 1 dose I'm in trouble. With me body parts always try to go to sleep. Now I'm on crutches, wheelchair it's worse till I go through surgery until I get mobile again. Take care of yourself!

[kel55]

120mg isosorbide mononitrate every morning knocks me out for another 2 hours but keep the vessels open. I also have GTN spray for when needed. I didn't mention earlier that I'm also on clopadogreal. Good god I'm a walking wreck! How the timings with you - I build up and end up in hospital about every 8 weeks, on a good day I have about 4 events but on a bad day it's 4 times an hour, it can be 20 deg C and I'm white and cold or at least some part of me is!

[dzol]

My timing isn't specific but laying in bed or sitting too long always brings some issue. I have to take Nitro every couple of weeks when the isosorbide doesn't do the full job. Literally feels like a heart attack until it kicks in.