Re: STILL no DIAGNOIS - Update

[Guest guest]

Hi Debbie;

Thanks for the update ... this must be all very frustrating for you.

But it sounds like you have found a great GI who is doing some really

good detective work. The possible sarcoidosis connection would seem

to be worth checking into, as this might account for your fevers and

night sweats. Have you had a serum angiotensin converting enzyme

(ACE) test? This enzyme is often elevated in sarcoidosis.

Best regards,

(father of (19); PSC 07/03; UC 08/03)

[Guest guest]

Hi ,

Yes, I'm very pleased so far with my new GI. And, no, I'm certain I

haven't had the ACE test you refer to. Is that something that

detects sarcoidosis? My GI thought there was a blood test of some

sort, but couldn't put her thumb on the name.

Debbie S

>>The possible sarcoidosis connection would seem

> to be worth checking into, as this might account for your fevers

and

> night sweats. Have you had a serum angiotensin converting enzyme

> (ACE) test? This enzyme is often elevated in sarcoidosis.

[Guest guest]

Hi Debbie;

From what I have read, the angiotensin converting enzyme (ACE) test

is often used as a biochemical marker for sarcoidosis [see the fact

sheet available at the following URL]:

http://www.nhlbi.nih.gov/health/public/lung/other/sarcoidosis/

Best regards,

Dave

[Guest guest]

Thanks Dave for the link to such an informative article. According

to it, though, it doesn't appear there is a genetic link (the

disease isn't passed from parent to child), although it can occur in

families. Weird.

My husband actually had sarcoidosis of the ankle some 20+ yrs ago,

which passed after a few months. His was confirmed by a biopsy of

the lymph nodes, as was my mother's. It's really strange to even be

thinking sarcoidosis as a possible cause of my fevers with having

had this relatively unheard of illness already affect those so close

to me.

I'm backing away from the idea of sarcoidosis, and ANY idea of a

possible cause for now. Until I have a confirmed diagnosis I don't

see the benefit in exploring the 'what ifs'. I have one symptom

only, and that is recurring fevers. Oh, and somewhat elevated liver

enzymes. I'll let the doctors do the work for now, and put my own

efforts into research later.

Thanks again for the info, though. I did read the entire article, as

it was really fascinating learning about the disease from the

standpoint of my husband and mother having had it.

Debbie S

[Guest guest]

Thanks Dave for the link to such an informative article. According

to it, though, it doesn't appear there is a genetic link (the

disease isn't passed from parent to child), although it can occur in

families. Weird.

My husband actually had sarcoidosis of the ankle some 20+ yrs ago,

which passed after a few months. His was confirmed by a biopsy of

the lymph nodes, as was my mother's. It's really strange to even be

thinking sarcoidosis as a possible cause of my fevers with having

had this relatively unheard of illness already affect those so close

to me.

I'm backing away from the idea of sarcoidosis, and ANY idea of a

possible cause for now. Until I have a confirmed diagnosis I don't

see the benefit in exploring the 'what ifs'. I have one symptom

only, and that is recurring fevers. Oh, and somewhat elevated liver

enzymes. I'll let the doctors do the work for now, and put my own

efforts into research later.

Thanks again for the info, though. I did read the entire article, as

it was really fascinating learning about the disease from the

standpoint of my husband and mother having had it.

Debbie S