Quest for users and answers help needed please

[ladysteph1]

I joined this site to get access to the fol,owing users
Crazi
Toots1529
Sculpey5
Because they were posting about reidels thyroiditis, I have this condition and had it confirmed this week that it is spreading to my heart and possibly my liver.

Sadly the users haven't posted for some time and the site are unable to give me any details however, they suggested I ask the community!

So please if anyone can put me in touch with the users or anyone who currently suffers with reidels I shall be eternally grateful

Thank you all for reading :-)

[Barb135]

I understand how you feel about wanting to know if the others are in good health, but since MH does have a very strict privacy policy, there's no way I can help you there.  Research is the best I can do for you.  I wouldn't normally do this, but have you tried any other message boards to try to find others who have the disease?

[ladysteph1]

Thank you for taking the time, hopefully the new doc will prescribe the meds I need, it would be nice to know if the others are in good health then this wouldn't be as worrying.

[Barb135]

I'll do some more research and see what I can find out for you.  We find that much treatment by NHS is dismal.  Many of our members end up having to get private medical care.  Is that an option for you?

I've just done a bit of reading and it seems that Reidel's, itself is a self-limiting disease and if diagnosed/treated early enough, the prognosis is good.  I haven't found anything that indicates that the disease is terminal.  

It does sound that Reidel's is one of the Immunglobulin G4 Related Diseases (IgG4).  IgG4 is a rare antibody; an IgG4 disease is a disease in which inflammatory cells cause fibrosis, the deposition of connective tissue, in one or more organs.   "A disorder termed “multisystemic fibrosclerosis” in the 1960s probably represents—in most cases—IgG4-RD."

I'm still researching, and I know you're afraid, so I don't want to say a lot, at this point.  From what I can see, it sounds like most people respond to glucocorticoids.  I'll continue researching, though there really isn't a lot to read about it because the disease is so rare.  Most of the reading is in regards to the IgG4 related disease issue.

[ladysteph1]

Thank you I need to track down anyone with reidels which has spread to the chest mine is currently around the aortic arch and possibly in my liver but this is to be confirmed with yet another MRI
I am seeing a new endo on Monday hopefully to start treatment which should have happened in 2013.
I need to know if anyone has survived I am frightened by the whole thing and my treatment by the nhs has been dismal.
Any help is appreciated x

[Barb135]

I don't know how long it's been since any of them posted on the site, however, a quick "people search" for those nicknames comes back with "no people found", which indicates that none of them are any longer members of MH... Beyond that, there really isn't anything we can do to help you find them.

I also don't know of anyone else dealing with Reidels, at this time.  I did a little research on it last week, but didn't go into it real deeply.

If you care to tell me, more specifically, what you're trying to find out, I can research some more and try to help you.