Question for everyone

I do have ES and I also have hereditary hemochromtosis just wandering if anyone else has the two. How can one person have two rare things I’ve asked my doctors if they are linked in anyway and they don’t know.

Hazeleyes, I don't have that other thing you have, but I have two other very rare conditions that aren't related to Eagles.

I believe I have Eagles syndrome and have also been diagnosed with Palatal Myoclonus which is also not common.

I don’t have any other rare conditions that I am aware of but my surgeon’s assistant just called to ask if I knew I had a nodule on the right side of my thyroid (which I wasn’t aware of). They found it on my 3d scan and will ultrasound it after surgery.

Thanks everyone. One week from today till surgery getting nervous but I know everything will be ok and hopefully a fast recovery.

Easily. Two thoughts. Everybody has physical weaknesses, but they are not always recognized or do not affect a person. Then, when something triggers bodily stress, these start to surface. I think, too that there are certain types of problems which are somehow connected, so the circus begins to see which is the most serious or recognizable.
Then, too, the drs. say there is no connection.
Perhaps we all carry all of the known ailments, but our genetics, life history, etc., decides which one will be our burden.

I have had about a half-dozen conditions which have caused the drs. to shake their heads. Technically, I should have died as a baby. So, maybe the drugs I was given for my first surgery when I was 6 months old was the trigger... affecting my intestines by killing the good germs, which in turn affected by failure to adequately absorb nutrition. None of my siblings had anything like I did. Family history is very vague.

I have familial neutropenia. Neutropenia itself could explain my extreme fatigue. I keep wondering ... maybe the neutropenia affects me and not my other family members. But doctors ignore it since it's 'familial'.

~~ I'm curious; have you tried chelation? I'm not sure it's specifically for iron but perhaps worth looking in to.

Hopeful

I was diagnosed with three sort of rare things within two years. I have ES, hyperparathyroidism and malignant melanoma eye cancer. I'm getting ready to have my 5th sugery in a couple of weeks. My doctor also wondered if this could be some sort of "syndrome" to keep getting rare things.


I have hyperparathyroidism too. Also low D, K and mag for a very long time. Trying to get them up. Ive read that these low vites can lead to calcifications.
kimmiesue said:

I was diagnosed with three sort of rare things within two years. I have ES, hyperparathyroidism and malignant melanoma eye cancer. I'm getting ready to have my 5th sugery in a couple of weeks. My doctor also wondered if this could be some sort of "syndrome" to keep getting rare things.

Interesting about the lower vitamins; I never did assimilate calcium. Numerous problems because of that. I think it lead my body to over compensate and pile of the bony material/scarring internally. After a foot surgery, my body attacked a metal pin and was building bony material around it, talk about pain - it had to be drilled out. I think that is part and parcel of the immune system weaknesses.


Ive been low in d, mag and k for years and then started to take high doses of d, a year later is when I found this calc in my throat. I have read if you dont take the right combo of d, mag, cal, K2...bad things can happen. I just wanna know how to fix this and for me, to know what doses of these vites to take yet no doctor helps me. My labs keep tanking :(
Ladygw said:

Interesting about the lower vitamins; I never did assimilate calcium. Numerous problems because of that. I think it lead my body to over compensate and pile of the bony material/scarring internally. After a foot surgery, my body attacked a metal pin and was building bony material around it, talk about pain - it had to be drilled out. I think that is part and parcel of the immune system weaknesses.

I know the drs. are always telling me to take certain things,. but it seems to be on a general scale. How can we really benefit if the dosage is not correct for our needs?

I just read that Vitamin K2 in high doses can reverse calcifications. Has anyone ever heard/read this? Thoughts?

No haven't since I've heard calcification it's not reversible. But I'm going to find out, thx for the tip.

Good luck Julie with your surgery.

julie watson said:

Good luck for tomorrow hazeleyes praying for you sweet x x ill be in surgery on 12 nov x x

Hazel eyes,

my son also has another very rare condition different from yours. I was told there is not way they are connected, but yet I am sure they are regardless. He also has palatal myoclonus like christian22

The more research I read the more I think mine was caused from high doses of D and not enough mag and no k2. I read that for every 1000iu D you need 100mcg k2. Calcs can happen from TOO much D and not enough of cal, mag or k2 in conjunction. I have read that calcs can be reversed with high doses of k2. I wish I knew people on here who have tried this. Ive been on 50k D3 for 3 yrs cuz of a weight loss surgery I had. where I dont absorb most of what I take in. Only 10% of fat, and 30% of protein. So I need high doses of ADEK. I have asked in my weight loss surgery group (I had the duodenal switch) and they claim I need more cal and D cuz my PTH is high. :( SO STRESSED x

I have Cronic idiopathic Neutropenia. Started in my 20s. I have wondered if the filgrastim could have caused the Eagles, or if the Eagles is causing the Neutropenia. Do you take filgrastim injections?