Sarcoid of the esophagus????& SF study for Sarcoid

Today i had a colon/endoscopy.
Has any one ever been told that they have lymph nodes that were growing or pushing into your esophagus? The Dr. gave me a couple of pictures of the 2 spots. They are definitely strange looking.
I would love to hear about anyone else having this happen to them or if you have been diagnosed with esophageal sarcoid.
Next Tuesday i will be in San Francisco regarding the study they are doing there. I will be showing the results to them and try to get more information.
This study really interests me because they are "asking questions and trying to figure out how and where and why we get Sarcoid." They also have a Neruo Dr. involved. They have an MRI that gives higher scans. "7" in stead of the normal "3". (Not really sure, hope to find out more)Maybe they will find out more about my 6 white spots in my brain.
They are also doing 2 different eye test.
When i get back i will put the information i get on Inspire.

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16 replies. Join the discussion

Sorry to hear that. What are your symptoms regarding throat area.

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Hi DiLyn,

I don't seem to have that kind of GI sarc, but I sure don't know. Which doctor at UCSF are you seeing? I went to Dr. Koth and she just took blood, and had me answer questions for her study. How might I get into the study you are in?

God's speed
DJ

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I have some very strange soreness that comes and goes around my thyroid and upper esophageal area. Went to ENT and scoped my throat to find nothing. Suspected acid relfux, actually silent reflux. I started taking Aciphex and it seemed to go away, but not always. It comes and goes. I am almost positive that it is related to my sarc in my lungs/lymphs. ACE is good and still on pred taper...crossing fingers for less pred, great drug, bad time. I will update if I discover more, but I will be back to my ENT in a month if this doesn't get any better. The "it must be related to teh prednisone" diagnosis is getting old. Best wishes and good luck.

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I too have had issues with a strange soreness around my thyroid. I have also been diagnosed with Barret's disease of the esophagus. I am on Ranitdine and Negrid both of which helped for a while. I have an endoscopy next week to find out more. I'll let you know what I find out.

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I first had it in my lymph glands in the near my esophagus so when I get a bad inflammation, I get horse and some GRD.

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I have been told that the granulomas are "enrobing" my esophagus, and in june my gastro doc went in and stretched my esophagus because it had become hard to swallow and I choked on my food frequently. It helped a lot.
Veronica

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I have hoarseness that comes and goes; my endochrinologist says it's not my thyroid (on Synthroid for 25 years) that is causing the problem, but I have heard that sarc can cause throat issues- they are annoying.

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Hi DiLyn,
A few years ago I had a CT of abdomen and chest that showed distal esophageal 'thickening". I have had 'unexplained inflamation and/or thickening throughout my GI tract inlcuding stomach, sm intestine, terminal illiem, esophagus. Despite colonoscopy, endoscopy, small bowel series, etc, etc, doctors dont want to call any of this sarcoid related but dont have any other answers or explanation, I assume it is the sarc.
I have had symptoms like Joy and Veronica. My voice gets very hoarse at times. It is very hard to swallow as well. When my food gets "stuck' /very slow going down people tell me to drink some water. For whatever reason drinking water only makes it worse. It usually goes down in a minute or so. I have only had two episodes that really scared me where large pills actually got stuck.
When I mention these symptoms to my doctors my PCP said we could 'stretch it" like veronica and my rheumy wants me to have another endoscopy done but Im not a big fan of this procedure so Ive basically just put it off. Ive also been told I need to see a GI doc but Ive seen so many over the years and it never gets me anywhere. The last one said I needed my gallbladder out asap, then when I went to the surgeon he told me I didnt, that I should get my sarcoid checked to see if it was active, it was. Thanks for posting about this, most doctors dont subscribe to GI sarc.

Kristopher

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Hi Veronica,
I am glad your procedure, the stretching, helped you. I wondered, would you share your experience w/ the actual stretching? Was it painful? Were you under general anethsesia You said it helped alot. I was wondering if the granulomas that were 'enrobing' or surrounding your esophagus, what was done about them? Were the granulomas removed as well when the doctor was in there stretching the esophagus? Did the doctor say that new or then present granulomas or lymph nodes would be a problem in the future? Any info would be appreciated when you have the time to reply. Thank you.

Kristopher

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Thank you all for your posts. It seems there are always people out there with sarc that have the same symptoms.
5 years ago i did have my esophagus stretched. It was done while they were scopping you. It wasn't painful afterwards and it helped.
They didn't do it this time....because....i quit breathing during the procedure. He mentioned it to me but until this morning and my chest hurt(compressions) did i remember. I have a call into my GI Dr., my ENT , Pulm(he's in Kenya...won't be back until the 7th) and my GP. So i'm hoping to find out what happened yesterday. My ENT is great...actually they all will call me...YUP...not the staff but the DR.'s. So i should hear something tonight or tomorrow.
Thanks for all of the information.
I read somewhere on the inspire page that, there are a few that also have fibromyalgia,....that they think it might come from the Sarcoid.....I kinda agree. I'll see what the Neruo say's in UOSF next week. That should be an interesting couple of days.

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I was diagnosed last week with sarcoidosis by a biopsy of the lymph nodes in my chest. I have had cardiac symptoms with mine requiring a defibrillator and multiple ablations. I have noticed over the past year that when I eat a heavier meal that my heart rhythm problems are more pronounced and that I have had increasing reflux symptoms. Occasionally I notice it takes awhile for a food bolus to pass the distal esophagus. I have had so many problems with the cardiac sarcoidosis I have actually neglected talking with GI to discuss this new and oddly associated symptom. I had a PET scan which lit up my nodes, heart and right lung. I don't remember if the esophagus was involved. I will inquire though. I hope your symptoms improve. I started prednisone last week. Take care.

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Good luck at UCSF.
I started going there before we lost our 'good' insurance. I was seeing Dr. Gomez. Really liked them.
We now have another insurance and I am thinking of going back. Just not sure if I can afford what my insurance doesn't pay. Especially since I'm due for another MRI.

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Do any of you with the hoarseness find that in the fall and winter you start coughing and the hoarseness gets worse. That seems when it's the worse for me. that and talking too much. LOL
Kmb
I talked to my ENT today. if the lymph nodes were up higher in the eosphagus then he would deal with it....but because it's the nodes in the lungs and around the heart... it then passes to the cardo Dr and Pulm.
My Pulm's in Kenya so i won't be talking to him until Nov. When i find out anything i'll post. Hopefully the Neuro Dr. or Dr. Koth(Pulm)at UOSF will know more about this and give me an idea what is done for it.
Ntrae426
give them a call about the study. Dr. Laura Koth(coat) is
in charge of the study. If you live close it might be a good thing for you.

Doctorbrian
I'm so sorry your going through all of this. Sarcoid is such a nasty disease. It affects so many all different ways. Go to your GI, reflux can do so much damage when untreated. I've found that i can't eat regular meal's. i eat small amount more often. Some food i love to eat doesn't love me.(salad...iceberg lettuce)causes problems when i eat it...so i limit the amount..

I'm hoping that this study will help find a link to the causes of Sarcoid. I've had it for over 30 years..it's been slow growing but the last 6 years the progression has gotten faster. I wonder if some of the other disease's we've also been diagnosed with, fibromyalgia, restless leg, sjogren's....ect....are they secondary, caused by the sarcoid? All of these disease's are auto immune....so are they related.
I'm hoping this study will be able to find a link to help us and those that haven't been diagnosed with it yet.
Thank you all for all the encouragement and if i can ....I will be that guinea pig ....anything to get to the bottom of sarcoid.

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Hi, Kristopher. I was having an endoscopy and mentioned the problem to the doc before the procedure. He was aware of my Sarc. He said there was no actual granulomas in the esophagus, but there was compression. He stretched it during the endoscopy, so I didn't feel a thing, and there was no discomfort after. Hope it helps you.
Veronica

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Thank you Veronica and DiLyn.

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My GI Doc called me this morning and the lymph nodes that are pushing in from my lungs are taking up about 50% of my esophagus. When my Pulm Doc gets back i'll see what he has to say.
Thanks for all of the posts.

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