I have had EM for about a decade, but was only officially diagnosed two years ago. I have been very sick the last 12 years. Terrible fatigue, brain fog (sometimes extreme), random painful muscle problems that last for years, nerve problems, etc.
The worst has been the EM and not being able to walk or handle heat at all.
But my kidney hurts really bad sometimes. I have stones sometimes, in fact, my health crashed overnight when I got my first stone in 2005. So when it would hurt and I would have blood in my urine, I always assumed I was having another stone.
But this time I kept hurting so they did a CT and there was no stone big enough to cause any pain. And because there is protein in my urine as well as blood, they are concerned about Amyloidosis.
Sometimes people who have amyloidosis get the proteins embedded in the skin, have burning feet, etc.
Does anyone know about EM caused by amyloidosis?
It’s pretty unhappy when your doctor uses the words “amyloidosis” and “cancer” in the same sentence.
We have never nailed down the cause of my EM yet. Maybe it’s this. More tests are to follow, I was just wondering if anybody has heard about a connection?
I am also considering the irony that we studied amyloidosis in health class in junior high, while it is half as prevalent as EM. It’s a strange world.
Whatever comes, answers are better than endless painful mysteries! So I will stay positive until I know more.
@Cindy2 oh dear I hope not. My partner has Neuropathy and Cardiomyopathy because of genetic Familial Amyloidotic Polyneuropathy; That’s FAP. I had my symptoms a few years before his so we b knew to go to Dr. If AL Amyloidosis would a bone marrow biopsy be better. Please let me know how you get on. Haematologist is the Specialist that helped Vince.
The hematologists would not even see me because my CBC is so normal. Not even to run tests for myeloproliferative problems that might be causing my EM.
I am waiting for an appointment with a nephrologist, he comes highly recommended. My doctor said he will probably order a kidney biopsy.
Big needle… so it should be an adventure.
My uncle has multiple myeloma type cancer, which often causes AL amyloidosis.
I’m sorry about your partner’s familial amyloidosis. Have any treatments or alternative therapies helped? I have read that it is a difficult road.
I womder, do they often have an aversion to eating meat? It’s getting harder to get enough protein. And I can’t eat many vegetable proteins, although I do not have an aversion to them. Except for how terribly sick they make me.
Good luck @Cindy2 - he finds that teaspoon of Tumeric Powder in Almond milk and 2 EGCG tabs (just under 800 mg) us extremely helpful - along with 500mg Diflunisal slow the misfolding protein down.there isn’t a cure.
Update - the nephrologist does not think I have amyloidosis, at least of the kidneys. It is a big relief. He will keep monitoring me for the next several years, however.
They put me on a low oxalate and a low protein diet. I wish they had warned me to do the low oxalate thing gradually, but that’s a whole different support group.
And the low oxalate is really affecting my EM. Once I am through the uncomfortable process of adjusting to it, I will write more. I have hope that it might get a lot better with that diet. But I will wait and see how it affects me. If it does help, I will write all about it on a new thread.
