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Old 03-02-2011, 07:48 PM   #1
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Hi, I'm new to sarcoidosis. What now?

Hi. I'm a 26 year old female and after almost a year of agony, I finally have a label for my disease--sarcoidosis, oh, and ankylosing spondilitis. I had been having strange symptoms since last spring, which included strange neurological disturbances, chest pain, facial redness, difficulty breathing and constant back pain and fatigue. Over the past few months I started getting what appeared to be red hot swollen knees, raynaud's phenomenon in my hands and feet, peripheral neuropathy and sharp chest pains.

Two weeks ago I went to the ER for severe chest pain, which radiated through my arm and neck. They didn't find anything and sent me home. They claimed my chest x-ray was "completely normal", however I found otu this was not really the case, because my doctor's nurse contacted me the next day confirming they had found a "shadow" in my x-ray. The following week I had a CT scan of my chest to see what was going on inside. My doctor was very cautious about telling me what she was suspecting. I found out through my psychiatrist who went through my medical files and found that I had unusually large lymph nodes in my chest. This puzzled me, I knew I had enlarged lymph nodes, but what did she think was the cause. I freaked out that I had lymphoma, but had been expecting that I had possible lupus for a long time.

She called me yesterday and said she reviewed my scan and found granuloma's in my chest(a fungal mass and lumps on my lymph nodes). She asked me if I had ever heard of a disease called sarcoidosis. My heart sunk as she uttered the word. Yes, I had heard of it. She asked me what I knew about it, but all I knew was that it was an inflammatory disease which attacks various organs in the body.

She told me that was pretty much all I needed to know about it. I didn't agree with that statement. I need to understand what my disease will do to me, how to treat it and what life adjustments I might need to do. She noted she also saw inflammation in my spine and claimed that I had ankylosing spondilitis in addition to the sarcoidosis. She cautioned that there was a slight chance that the sarcoidosis could actually be a different, but similar inflammatory disease. I asked her if she thought lupus might be an alternative diagnosis, as I have been having raynaud's and a malar rash. She claimed my lupus tests were negative and it wasn't a possibility. Does sarcoidosis cause malar rashes too?

My next step is seeing a pulomologist for a biopsy to confirm that I do in fact have sarcoidosis and a certain fungal infection, one she claims was caused by a past contact with bat or bird guano. I didn't really know what to make of the diagnosis. I never heard of fungal lung infections, and I didn't really know a whole lot about exactly what sarcoidosis does.

I'm scared about damage to my lungs, my spinal cord and possible brain involvement, as I have been having myoclonic jerking, involuntary noises, possible absence seizures, poor memory, difficulty speaking or finding words or understanding them, stuttering while speaking that's entirely new, facial twitching, double vision/tunnel vision, scotomas, flashes of light in my field of vision and visual snow--multiple sclerosis like symptoms.

I keep having feeling like I'm going to have a grand mal seizure, I've never had one, but somehow I have this feeling I am going to, and I become rigid and shaky, my body feels like it's about to erupt in uncontrollable movements and I'm going to lose consciousness. My mom has epilepsy, so it scares me even more. She even gets paranoid about me developing epilepsy or seizures, this was even before my diagnosis or having any knowledge I was having any neurological symptoms.

So, I very well, and most likely have sarcoidosis. What do I do now? What should I expect? Why are my physical limits? What is my likely prognosis? Everything I read about sarcoidosis treats the disease as if it were an automatic death sentence. I won't live past age 36. I'm early in the disease, so shouldn't I have a high likelihood of success? I'm interested in hearing other sarcoidosis patients stories. Where do I go from here? Is my future career in science down the garbage shoot? Or should I expect periodic times of being a homebody until I go back into remission?

 
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Old 03-09-2011, 12:09 PM   #2
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Re: Hi, I'm new to sarcoidosis. What now?

Hi Pink,

My mother, who will be 70 next month, was diagnosed with sarcoidosis in 2005 for which the common treatment is steroids. After much research on the disease, she opted to try an alternative treatment: The Marshall Protocol. She did more research and presented her Internist and Pulmonologist with her findings on the program. They were initially reluctant but the eventually agreed to go that route.

Three years after she had begun, all life threatening symptoms were resolved; now after six years she is healthier than she has been in decades. Sarcoidosis is not a death sentence. Keep an open mind, do your own research and best wishes for you.

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Old 03-13-2011, 06:08 PM   #3
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Re: Hi, I'm new to sarcoidosis. What now?

Pink, I'm new to the board and new to sarcoidosis as well, but I don't think you should consider it a death sentence. When I was diagnosed last week, I told my GP (who had the radiologist's report, just as I did) that I only knew two other people who had sarcoidosis, and one of those is dead. He knew how panicked I was and reminded me how rare it is for people to die of sarcoidosis. I have not seen the pulmonologist yet, but based on the information I already have, he's going to say pulmonary and mediastinal sarcoidosis and that with further tests and a visit to the opthalmologist that will be extended to ocular and/or neurological sarcoidosis. When I spoke to the pulmonologist's nurse, she indicated that they treat a great many people with this disease and that he probably wouldn't even do a biopsy because the films are so classically sarcoidosis. She also indicated that I'm looking at a year on prednisone. Yippee.

I had no symptoms except shortness of breath, which I attributed to a weight issue. (How come most people with sarcoidosis LOSE weight and I'm the lucky one to GAIN it?) The MRI that started the ball rolling was intended to visit the progression of my degenerative disc disease, for which I have already had a four level cervical fusion. When the radiology report was all about my lungs and barely mentioned my poor deteriorating spine I really thought the films had been read by a medical student who had just finished his pulmonology rotation. So did my GP. The CT he sent me for was intended to be exclusionary and then we were going to have my neurosurgeon read the films himself.

I'm a pragmatist; my glass is neither half full nor half empty, it's half a glass. So generally I try to prepare for the worst and then hope for the best. I think the reason you were not given any specific symptoms or effects to look for is that this disease presents so differently in different people. As I said, I had no symptoms and it sounds as though you had them all. I'm hoping that my pulmonologist will give me some guidance about which of the health issues I am experiencing might be attributed to sarcoidosis, but if not, I can count on my GP to be on top of it. It IS scary and you have a right to be tense, but statistically, you're not likely to die and in all likelihood you'll get some relief from the steroids. Since we're starting at the same time with our diagnosis and likely treatment, and since I'm as scared as you are, we can use the buddy system and watch each other get better.

 
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Old 03-13-2011, 07:11 PM   #4
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Re: Hi, I'm new to sarcoidosis. What now?

Thanks for the replies. It's good to hear the words--it is rare to die of sarcoidosis. My worst fears aren't so much the sarcoidosis, but my histoplamosis fungal infection as the complications of my disease, and fear of it getting really bad and potentially life threatening. I feel weaker by the day. Walking a block or going up two flights of stairs sounds incomprehensible and scary to attempt some days. But I've read that people can have it for years and not die, and I think my infection may not be so bad,

I see my pulmonologist the day after tomorrow, so I will get a lot of information in the next 48 hours. Also, the idea of taking prednisone for a full year sounds really bad, but I suppose it's better than giving yourself Humira injections everyday, as many people with severe autoimmune diseases do. So, things could be worse.

However, the risk of osteoporosis with prednisone is disquieting, as I have ankylosing spondilitis. I'm very worried about the future of my spine.

OctaviaGreen when you were diagnosed, did you have swollen lymph nodes? I'm having pain when swallowing some days, and I think it's from having possible mediastinitis. I suppose it could just be from a swollen lymph node pushing against my esophagus, which I read happens in sarcoidosis. I really don't want to fear permanent damage to my upper middle abdomen.

 
Old 03-14-2011, 02:43 AM   #5
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Re: Hi, I'm new to sarcoidosis. What now?

As far as lymph nodes are concerned, I'm not the best test balloon. I had an extremely serious case of mono as a teenager and my lymph nodes were so swollen that my airway was compromised. Since then, any time I get a sniffle or sometimes just in the morning because I've snored like a man all my lymph nodes swell. Yes, they are swollen now, and yes, it's more than usual, and one of them is quite firm. I just didn't think anything of it because of the history.

Because of the degenerative disc disease and degenerative arthritis in my back, and because over the last few years I've had SEVERAL lumbar shots, I'm concerned as well, but given a choice between the devil and the deep blue sea, I'm going to pick the devil every time.

I've already got a hiatal hernia, and if that's what you're concerned about, the sad truth is that 60% of the population over 50 has one. I'm told that unless they're quite large, they rarely operate on them any more.

I've got a lot longer to wait than you do for an appointment; I'll be anxious to hear what he says.

 
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Old 03-14-2011, 05:35 PM   #6
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Re: Hi, I'm new to sarcoidosis. What now?

Ah, I'm too young to be one of the 60% of people over 50 to have a haital hernia. My grandmother had a bad one for a long time. I don't know if her's ever went away. I did have gastritis in my stomach about a year ago and had suspected I had a hernia with all the pain with swallowing and nausea. Stomach problems are not fun, but neither are lung diseases. I can't decide which one is worse.

I think my lymph nodes are just pressing against my esophagus, because the pain comes and goes and doesn't seem to be like a hernia. I'll have to ask my pulmonologist tomorrow. I'm both excited and wary of my appointment. I just hope he doesn't have worse news than my gp gave me. I'll just have to see.

Good rest and good nutrition seems to help out a lot. I think the same would go for any ai disease or infection. I definitely suggest this as an important part of treatment in sarcoidosis.

 
Old 03-14-2011, 10:00 PM   #7
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Re: Hi, I'm new to sarcoidosis. What now?

The 60% isn't meant to be exclusionary. I had a friend who had one in the eighth grade so serious that they operated, which they hardly ever do any more. It may mean that BY THE TIME one is fifty 60% of one's friends will have a hiatal hernia. I have one. I've also had my lymph glands in my neck so swollen that I had to hold my head in a specific way to breathe, and I have an esophageal ulcer, plus oral lichen planus. But in re-reading everything you've said, have you thought of celiac's?

 
Old 03-14-2011, 10:20 PM   #8
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Re: Hi, I'm new to sarcoidosis. What now?

That is horrible. I couldn't imagine having to hold my head a certain way to breathe, I'd go insane. I'm so sorry to hear that. I guess I shouldn't complain so much, my esophageal/lymph node problems are certainly not anywhere that severe. I never heard of lichen infections either. Heck, I'd never even heard of chest fungus infections either. I'm learning so many strange new things about microbial infections.

But I know I don't have celiac's, I was tested for it during a colonoscopy back in the summer of 2009. The only other illnesses I have been diagnosed with so far are IBS and ankylosing spondilitis, and suspected fibromyalgia.

I did for a while suspect that I may have had a mild IBD, and my gastro even told me some doctors believe that IBS is a mild inflammatory disease. I think my problems may be tied to autoimmune symptoms.

 
Old 07-21-2011, 07:15 AM   #9
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Re: Hi, I'm new to sarcoidosis. What now?

I have been having symptoms like that also. I have been having trouble breathing and swallowing, facial twitching that lasted about 2 months, feeling like i may black out, pain at joints, really pain all over. The breathing thing is what scares me most. My chest feels so tight like my airways are closing this happens all day long. Also it feels like my heart beats fast, then slows all the way down. sarcodosi can affect the nervous system ive read. I havent had a diagnosis but i really feel i have sarcodosis. i had an x ray done of my chest they said it was normal. sometimes i can lymph node enlargement in my chest and the lymph nodes in neck and groin. I just went to the doctor yesterday and he says he suspected it based on the symptoms, but he said since my x rays for chest were normal that i don't have sarcodosis. I believe it is possible to have normal chest x ray and still have sarcodosis. I will ask him to perform an ACE test I read it is a test used to detect sarcodosis. I hope you get better and I wont stop until i find out what is going on with me. These doctors get on my nerves telling me the reason why i cant breath or swallow is due to stress~ quacks

 
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ankylosing spondylitis, auto immune disease, raynaud's syndrome, sarcoidosis, seizures



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