Stop Sarcoidosis Support Community

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Verbal, mental and emotional abuse

By Singinglawyer · New reply 10:21 pm
Journal · 12 replies
I am involved in a marriage in which I am being subjected to much verbal, mental and emotional abuse. I need help. I am a survivor of sarcoidosis. And I know if the Lord can work miracles with Sarcoid ...

Brody

By mythreeboys · New reply 10:11 pm
Discussion in Family and friends · 4 replies
Just letting you know that dr found noncaseating granlnomas in Brody at age six months. We have not a had a firm dx but with his findings of granulnomas throughout, symptoms, clinical workup, gene test ...

what i should ask my specialist on friday?

By kellie4kids · New reply 10:09 pm
Journal · 6 replies
friday i am going to see the specialist and i don't know where to start when i go in. what questions should i ask ...

Hair Loss Question-Methotrexate

By Amyly2n · New reply 9:57 pm
Discussion in Treatment decisions · 16 replies
I really love this forum, its been so helpful. I started methotrexate this week and have no clue how I missed the "hair loss" in the side effects list the pharmacy gave me when I picked up my prescription ...

who do you call when you get sick

By kellie4kids · New reply 9:18 pm
Discussion in Living with sarcoidosis · 15 replies
who do you call when you get sick. i have 3 diffrent doctors and i called one and she acted like it was not her place to deal with what was going on with me ...

NCV/EMG.. also EEG,, and Lumbar Puncture

By Tim4343 · New reply 9:14 pm
Discussion in Treatment decisions · 4 replies
Ok people need to know if anyone has had the above EEG,,, NCV/EMG,,, Lumbar Puncture ---- ok so what to exspect from this from Neourologist ...

eye test result a little worrying

By chandilli · New reply 8:52 pm
Discussion in Symptoms · 9 replies
Hi all, I had my eye exam today and after two lots of 3 different drops and photos of my eyes taken and countless other tests. The guy sent me out of the room so he could ring the specialist. When I was ...

Leg and foot swollen again

By Challenged · New reply 8:20 pm
Discussion in Symptoms · 16 replies
Seems that every year about this time, my left foot swells up like a huge water balloon. Been that way since 2001... hhhmmm... the year that I was first dx with sarc... anywho, last year Labor day weekend ...

Dos this sound familiar to anyone?

By Vajetfan · New reply 7:50 pm
Journal · 6 replies
Approximately 5 years ago my GP found an abnormality during an x-ray for back problems. It was diagnosed by a specialist soon after that I had Sarc but I was asymptomatic so I just carried on with life ...

methotraxate for sarcoidosis??

By evaggelia · New reply 7:26 pm
Discussion in Treatment decisions · 20 replies
hello, i am from greece. my mother suffers from sarcoidosis. she has been treated with cortizone for many years and she almost died because of the treatment (cushing syndrom etc...). the doctors now suggest ...

My symptoms

By makina · New reply 7:23 pm
Journal · 6 replies
From saclp to soles of my feet Twitching, popcorn like, worm like. Fast or thumps and electrical like. In small single fibers or big areas like whole thigh! Burning under skin, pins and needles, pin pricks ...

Terrible pain in feet/hands- HELP!

By dlrs · New reply 7:17 pm
Discussion in Living with sarcoidosis · 3 replies
I was diagnosed with Sarc last Dec. (09). I've been on pred. I have such terrible pain in my calves/ankles/feet and wrists/hands!!! lower back, too. I am on methetrexate (3 months) - seven 7.5mg a week ...

flu shot?

By airforcewifey86 · New reply 7:17 pm
Discussion in Treatment decisions · 18 replies
So last year, it was recommended by my regular doctor that I NOT get the flu shot...at the time I was in the middle of a flare up, and I was undiagnosed. Now I'm diagnosed, and I have an appt. tomorrow ...

Diffuse fatty infiltration of the liver

By MathsterT · New reply 7:04 pm
Discussion in Symptoms · 14 replies
Okay, I have read several posts where your CT scans show diffuse fatty infiltration of the liver. In addition to that, I also have an hepatic cyst (low-attenuation lesion in the left anterior hepatic ...

Pain in the neck!

By Audreyfwb · New reply 6:43 pm
Discussion in Symptoms · 9 replies
Hello everyone I am have pain running from my right shoulder blade up my neck to my lower jaw and ear. My right arm is also going numb. The problem is I called my PCP and his is booked up until November ...

Changes in kidney function?

By areyoukiddingme · New reply 6:30 pm
Discussion in Symptoms · 9 replies
I have noticed for the past couple months, that my urine seems darker and has a strong odor. I have had an appointment with a specialist for a few months, and have been putting off having it checked out ...

DARIER-ROUSSY'S SARCOID

By denyse · New reply 5:54 pm
Discussion in Living with sarcoidosis · 11 replies
Well the results are in on my 2nd biopsy off my Popeye arms...Darier-Roussy's Sarc. I guess it is a very rare form of subcutaneous sarc. Anyone out there with with diagnosis ...

Now I'm not even sure i have Sarc!!!

By Jama12 · New reply 5:41 pm
Discussion in Living with sarcoidosis · 1 reply
Hi Was dx'd with lung Sarc in March this year, following a biopsy which confirmed "tissue consistent with Sarcoidosis" was present. Also some "non-specific shadows" were shown up in a CT scan. I went ...

Sarcoidosis Website updated...Please take a look see!

By ecarol · New reply 5:31 pm
Discussion in Emotional support · 1 reply
www.jsof.org updated by Jane Vora, web master. Please take a "look see" She has donated her skills to JSOF for four years. Thanks again Jane.... emma ...

ABductor SD I got my first injection today

By ctoney · New reply 5:18 pm
Discussion in Treatment decisions · 2 replies
Hello everyone. Today I got my first injection of botox to help treat the ABductor Spasmodic Dyshponia. It went well, My throat is a little sore from them poking around with the needle so that they could ...

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Help and information from FSR

Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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The Stop Sarcoidosis Support Community connects patients, families, friends and caregivers for support and inspiration. The Stop Sarcoidosis Support Community is sponsored by the Foundation for Sarcoidosis Research in partnership with Inspire.