Re: Thanks and another question

[Guest guest]

I have been told that this desease is a rare desease but i'm beginning to

think that its not so rare. I'm really grateful to have found this

group to help with this. , I'm with you on this--I think we're misdiagnosed more often than the disease actually being so "rare." There is an organization-- NORD--National Organization of Rare Diseases, and yes- we could all be charter members. No "hurrah" there. . It is however, a very site, and has a limited amount of information on sarcoidosis and NS.

I have lots of questions, but will try to limit them as I don't

want to get to much info/feedback on any one question. Is chronic

diherrea apart of sarcoid, i haven't had a solid movement in almost

three years, my sarc doctor says I had sarc for several years before

i was diagonsed with sarc. Sarc can and does hit any and all organs, so it is possible that this is sarc--but it's also not unusual for us to have several auto-immune issues going on at one time. Have you been tested for Crohns disease. Many of the symptoms are similar. Also, have you tried Liquid Acidophylis (sp) or the Acidophylis capsules. They work wonders, and restore the natural balance of the intestines. If you've been on prednisone or alot of antibiotics--this is something you'll want to keep on hand. I get it at the health food store, and prefer the liquid form, a tablespoon (they have it in Honey or Strawberry flavor) and it works very well- without causing the constipation that the anti-diarheals cause.

I also have been having more problems with my eyes and my doctor

told me that is a concern with sarc. I have had three new

precriptions in the last year but the doctors won't/can't say it is

sarc related. NOw for the past couple of weeks I have been

experiencing twiching in my left eye and blurring. Almost a year ago

I was driving and my sight just completly blured out in both eyes,

i'm wondering if this was an early sign. , this part of the medicine is where I spent 10 of 17 years working. It was my Ophthalmologist that found my sarcoidosis, and ran the tests and got me to the specialists when I had bilateral iritis (inflammation of the iris) and pulmonary sarcoidosis 15 years ago. (It's now systemic and neuro, on top of pulm and eyes.) Check out both the ARCHIVES and the LINKS-- I've done numerous posts on the eyes and sarcoidosis. It is imperative that you see an Ophthalmologist (MD) and not an Optometrist. (OD). If the iris and uveal tract of the eyes becomes inflammed, then the pumping mechanism to regulate the intraocular pressure of your eyes goes up, and you'll develop a rapid case of acute glaucoma. As far as the sudden loss of vision-- yep, it could be sarc related, or it could be that you had a small stroke to the optic nerve. When and if this happens again-- get into to EYE MD immediately-- don't wait. You may loose vision permanently. Don't mess with the emergency room--call the EYE MD. ER docs are great for foreign bodies in the eye (sticks, rose bushes, etc)--but don't know squat about sarc and the eyes.

I was asked if my doctor was a VA doctor and the answer he was,

I have recently changed doctors to a civilian doctor, Dr. Duke, who

in my opinion knows crap about sarc but is not affraid to say so,

but knows specialist who do, and is working on getting me in to see

them. To me that is the best doctor to have, he knows me and

remembers what we talked about from one visit to another. This is definately a plus-- at least if the MD's ego isn't getting in the way of him saying I don't know shit about this disease, you're in good hands. I like that he's willing to send you out to specialists.

Now-- go to the LINKS and ARCHIVES. Print out the articles that are about NS, and about the first exam, the tests, etc. That way you can teach the PCP as well as your specialists--and get the ball rolling, and this disease under control.

Don't worry about asking too many questions-- there are three moderators and two owners of the list-- and several other very knowledgeable members in the group. We will share our information-- and help you out along the way.

Welcome to the family,

Tracie

NS Co-owner/moderator

[Guest guest]

Is chronic diherrea apart of sarcoid, i haven't had a solid movement in almost three years, my sarc doctor says I had sarc for several years before i was diagonsed with sarc.

Hi ,

It is for some of us. I know it is (was) for me and at least one other member of the group. , even though your doctor does not know a lot about sarcoid, it sounds as if he is trying to get you the help you need and is trying and willing to work with you any way he can. (This is a good thing ... I keep the doctors who admit they do not know enough but are eager to learn vs. the ones who claim to know everything and minimize symtpoms, etc.) Anyway, ask your doctor if he can try "Questran" on you. This was originally designed to be a cholesterol medication, but is used more now for intestinal problems. It was a miracle drug for me ... and that is all we with sarcoid can be grateful for at this point since there is no cure. Those of us with sarcoid obviously have an "inflammation" issue ... sometimes our pancreas becomes inflamed or enlarged which keeps our bile from passing through the liver and getting processed, meaning our bile is forced directly and often quickly directly into the colon before it should be. When this happens, we have HUGE amounts of pain for hours and daily diarrhea.

The Questran forces the bile into the liver and processes it appropriately, hence, taking away the pain and diarrhea. This is how it was explained to me at least.

Questran is not a bad medication ... so, even if this is not the answer for you, it is not going to hurt trying it. Questran is a powder ... it comes in packets (and a large container I believe where you have to measuare it out yourself) ... get the packets. You mix one packet a day with a small glass of liquid (I mix it with orange juice). It does not taste bad, and it can change your life.

I hope this works for you.

Good luck!!!

Joan

P.S. You mentioned that you do not want to ask all the questions you have because you do not want to be overwhelmed with too information ... I understand how overwhelming all of this can be, but please ask whatever and whenever you want ... with this disease, gaining knowledge from those of us who have already been there and know, quite often, more answers than the doctors is going to be very important to you ... example ... I knew I had turned neuro before the doctors were willing to admit it. I learned a lot from this group and read things that had not happened to me ... yet ... however, when they did, I was not alarmed because I knew and understood what was happening and knew how to act upon it (or not). Knowledge is going to be one of your key weapons when fighting this illness. So, please ... ask, ask, and ask ... if it is too much, just put the info away for a day when you want to know the answer and or need to know.

[Guest guest]

My neuro called it (NS) a weird form of a strange

disease. I think he hit that one on the head.

grannylunatic@...

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