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868575 tn?1250188018

Saroidosis?

Had a doc suggest this as a possible answer. I am not familiar at all with it. Only labs pos were C-reactive protein, high WBC and ESR. Neg Rh, ANA, lyme, etc.... not celiac. To many issues to print them all out here. Neuro damage, UC symptoms, severe abd and flank pain, chest pain, burning, and pressure. Low grade fever for a while, lymph involvement, systemic itching (sometimes with hives), night sweats, chills, hot flashes, some hair loss, and on and on.... Been told they know it is autoimmune, just not which one. So the question is.... what is sarcoidosis, how does it present, how do they test....
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Avatar universal
Did the docs confirm Sarcoidosis?  What has the treatment been?  How are you today?

I just received a preliminary diagnosis of cardiac Sarcoidosis from my cardiologist.  I am a runner and out of the blue, I started having an irregular heartbeat...much like what is listed above.  I have Hashimoto's Thyroiditis and Raynaud's phenomenon.  The docs have found, in a completely healthy heart (structure wise), a massive nerve block on the right side of my heart.  We just found out two days ago and are getting tests scheduled right now to confirm Sarcoidosis.  

I have had night sweats for years, horrible painful rashes on my ankles that leave scars, a dry persistent cough for a long time, massive acne all over my back (I am 36), et cetera.  I am very concerned abd curios about all of this.  Any ideas?
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868575 tn?1250188018
I agree all these would be good routes. I just happen to have a primary doc who believes there is nothing wrong, I am to young for it and perhaps she feels it is in my head? Other than that I keep being delgated to other docs. No consistancy anywhere. I can;t get anything ordered cause no one thinks it is their job.

As for the hypokalemia... do you have kidney issues from the sarcoidosis? What syptoms would you look for as warning signs? Tonight my feet decided to get puffy, which hasn't happened in years. At least not both at once without injury. My chest seems to be a little worse tonight, and my neck is all tight, but then again I did just have surgery sort of in the area. I guess it just feel like the doctors are going to take so long to even say there is something wrong that I will end up severely ill, more so than I am before anything gets done.
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Avatar universal
I was thinking, a chest/abdominal/pelvic CT with contrast, with barium swallow would be a good test in your case also. Thats the thing with regular chest x-rays, I mean there a good screening tool for a lot of stuff, but to really see what's going on, a CT would be like 10 times better. Beings you have persistent abdominal pain, and lymphadenopathy also it would help to see more of what's going on also.

I just hope you can find an answer to all of this soon, and let me know how you do, or if you want to ask me something you can PM me anytime.

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Avatar universal
I also have a lot of screwy issues with my heart as well, it pounds really hard just out of the blue, and will last for hours, and hours, even though I'm just sitting and relaxing. I know the first month I got sick this year I could never get the BPM to go below maybe 88, and it was usually in the low nineties all the time when relaxing, and if I stood up and started walking it would shoot right up over 100, this went on for at least a month. Whenever I go to a clinic they always say my BP is high, and I have a mild enlargement of my left ventricle. Usually I just ignore it, but will laugh to myself sometimes about that old guy on that show Sanford and Son: "Hold on ester...here I come, I'm having the big one" :-)

Okay seriously...I think having a Lumbar Puncture would also be a good test, just they should test for everything under the sun, especially the ACE in the CSF. Just like the ACE builds up in the blood from Sarcoidosis in the other organs, and tissues, if it is in the CNS (usually the meninges or cranial nerves) you can also have Neurosarcoidosis, which is just saying Sarcoidosis is in the CNS. I wouldn't worry about a kidney biopsy, unless you have renal failure or something, mainly any lymph biopsies, or lung scope with samples, and washings I think are your best chances for diagnosis. I've heard it both ways some people that get dx'd with Sarcoid, they found it in the lymphs, some they didn't find it in the lymphs, but found it in the lungs.

I know I went through all this same stuff, and my best recommendation would be to have your ace checked, if it's out of range ask to be sent to a Pulmonologist, and then get the bronch scope, because with your symptoms obviously there is something going on inside your lungs. I think you'll save yourself a lot of doctor hopping if you take this coarse.
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868575 tn?1250188018
Sorry I posted before finishing answering. They don't let you amend posts.... The burning started in my feet. Like being stuck on hot coals with no way out. Nothing helps. That spread to my knees and hips. Aweful SI joint stuff.  Then I started getting it mildly in my hands from time to time. The chest started two weeks ago with just burning but spread to the armpit and neck some. It isnt all the time. 6 days ago I started getting periods feeling like the wind knocked out of me and my heart pounding out of my chest like a panic attack, without the attack. It happens several times a day now, with little exertion. The lungs always feel tight and like a light burning. Can't breath deeply. Sometimes its get like a knot in my throat, but really low. just above the Bronchi. The intensity really varies. The chest is always mild, but flares to feeling like I need to go to the ER. (not that I have or most likley will) The flank pain is usually a mild throb below the ribs more posterior but can go right through to the front. It flares to not being able to move my waist at all. I tell my folks I need to be drawn and quartered between the flank and spleen area I feel like my abd has no room and needs to be stretched out.
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868575 tn?1250188018
I have had all the infections, parasties, HIV, and tuberculin, lyme, etc.. done. All neg. (cultures too) The lump in my neck was supposed to be a cyst. Not lymph, however the one on my clavical and in my armpit (all same side) are most likley lymph. They have not done any liver or renal in a while. I know the lump that just came out will be sent to pathology but doubt anything there. I am fairly sure the rheumy will start with biopsies and maybe lumbar puncture, since MS can be spinal and not show on head scans. (though I highly doubt it is that) I just wonder what they want to biopsy.. the nodes, kidney, lung? Sorry I can't write much.. just walked in from shopping and feel like my chest is going to give out....
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Avatar universal
I'm sorry you said hypo so your potassium was low. Actually that's exactly what they found in me also. Basically so far you and me have identical blood results.
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Avatar universal
Your main symptom that stands out to me is drenching night sweats, that is pretty uncommon except in severe infection like Tuberculosis, cancer such as Lymphoma, or autoimmune such as Sarcoidosis.

Just keep saying to yourself and your doctors biopsies and cultures, biopsies and cultures, biopsies and cultures. Because you have already proven from your symptoms and high sed rate, and C protein that you have an inflammatory process in your body. But that is still unspecific to infection, cancer, or autoimmune. So how do you diagnose infection? You culture bodily fluid and/or tissue samples. How do you diagnose Sarcoidosis? You usually biopsy lymph and/or lung tissue. How do you diagnose cancer? The ONLY way to ever diagnose cancer is by biopsy. I mean 99.9% not just "suspected" or "probable".

In my humble opinion your symptoms fit Sarcoidosis, cancer you wouldn't really have the skin lesions, and infection like TB or Histoplasmosis you would be pretty sick within a few weeks. So in the mean time if I was in your shoes I would chase down a serum ACE test, and really consider having a bronchoscope with lung tissue biopsy, and washing cultures. They might get something out of the Lymph node in your neck, but I think beings it's only one node that is enlarged, it might not show anything, and the thing with the bronchoscope is it will rule out some important infections at the same time, so you'll get more bang for your buck. Other tests they could do in the meantime also are LDH, HIV, and a tuberculin skin test. The doctors sort of by default that usually diagnose and treat Sarcoidosis are Pulmonologists, usually they are also trained in Internal Medicine because they care for people in the ICU also, and they are the doctors that normally perform Bronchoscopies.

You got me curious about the high Potassium, with your flank pain and a high electrolyte have they done renal tests? (kidneys) Or was it not high enough to be a concern? The burning pain can you elaborate about that more? (location, distribution, intensity)
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868575 tn?1250188018
Thank you both for getting back to me. I did have a chest xray and he said it looked ok to him, maybe a little "foggy" diffusely. Did it cause it has been hurting to breath deeply with episode of palpitations. They are sending me to a Rheumatologist, since things are just so weird. Yesterday I went in for a minor procedure (removing a lump from behind my ear) and in preop found out I developed hypokalemia over the last two weeks. Have had the r flank pain for about 5 days. No report yet on what the lump was made up of. I have a few others (appear lymph) that have formed over the last few weeks. I do, and have, got(ten) extremely itchy small dry cirles on my cheeks and chest and arms, couple on my legs over the years but usually it it red bumps. Mostly the itching is systemic. And started with a new allergy to sulfer drugs. I do have little lumps in many smaller joints that can itch and burn a lot. I do have a couple spots in my vision but the opthamolagist said it was not within the eye causing it. I think the worst of the last three years of this has just been the burning pain. Hopefully the Rheumy will get right on it and an answer will come soon. The fatigue is eating away at my life.
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592969 tn?1248325405
My mom lived with sarcoidosis for 50 years.  Sarcoidosis can affect almost any organ in the body.  Usually, at least two are involved.  Around 80% of people with sarcoidosis have lung problems.  It shows up on a chest x-ray, looks like the lungs are full of fluid.  Sarcoidosis can also affect the eyes, showing up as yellow bumps on the eyes which only an eye doctor can see.  Because Sarcoidosis is hereditary, I believe I may also have it.  I will be seeing my eye doctor soon to see if it is affecting my eyes as I am unable to wear contact lenses anymore and my eyes hurt even with glasses at times.  My eyes are dry and feel wind burned most of the time.  People with Sarcoidosis that affects the eyes can develop cataracts and glaucoma.  Sarcoidosis can last a few years or a lifetime.  It can affect the skin causing circle dry patches that really itch.  Sarcoidosis is caused by two genes. The two genes to my knowledge has not been pin pointed yet.  A virus, bacteria or poison sets off the immune system causing the Sarcoidosis to surface.  Hope this is helpful information.  Take care.  
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Avatar universal
Hi Rubiegem8280,

Sarcoidosis is basically finding (through biopsy), clumps of inflammatory cells called granulomas in the tissues and/or organs, causing all kinds of symptoms. It can evolve very differently from one person to another, and is unfortunately a diagnosis of exclusion.

I can't pretend to diagnose your condition, but can share some of my personal experiences with Sarcoidosis.

First it's important to know that I presented with Sarcoidosis in an "atypical" way. I first started to get chronic headaches about seven years ago, at first they were sort of chronic tension headaches, but later developed into more intense migraines like headaches on top of the "pressure headaches". About three years in I started getting paresthesia's in my legs, arms, hands, and right side of my face. All my scans were "normal". I insisted on a Lumbar Puncture which showed an elevated opening pressure, basically Intracranial Hypertension. Around this same time I developed proximal muscele weakness in my legs, and arms. It's important to know that beings I had mostly neurological symptoms at first I always assumed that if it was "autoimmune" it was from Multiple Sclerosis. Because it would also wax and wane in what seemed to be typical of MS, but then came this year when that all changed...

I was at work and started noticing my old leg weakness/pain returning, and I figured oh here we go again. I ignored it for about a week or so all the while it was getting worse, and finally the pain seemed to really focus around both my ankles, and both started to swell, and it got to were I basically couldn't stand for very long. I thought okay I've heard of this happening in women a lot with hormone issues and stuff, but I've never experienced this my self, and regular edema by itself is usually painless. I was sick of going to doctors and being sent home feeling like I was a hypochondriac, but I figured even they will have to admit this is pretty unusual. The first lady I saw did the normal blow off of "this is from to much salt", but did take blood, and I went home. Then when I came back the next week, I seen a different physician, and she was fairly concerned, which sort of blew my mind after being thought of as a hypochondriac for so long. She said your D-dimer is through the roof! So I had ultrasound for deep vein thrombosis, and an ECG, and a heart echo, all normal. Also during this time my white count was high, around 16,000 then it did finally drop a month later, but I haven't had follow ups to see if it has risen again. They also started throwing around autoimmune ideas like Lupus, and RA. My CRP, and ESR were high, but I was negative for ANA, and RF. Then about a week later I seen my regular GP, and he ordered a chest x-ray, and that sort of ended up being the "ace" in the hole. It showed extensive hilar lympadenopathy in the lungs. Around this time I started to also develop night sweats, chest pain, low grade fevers, peripheral edema, and the headaches came back. (I'm sure I'm not mentioning a lot of other symptoms too, but you know how it goes)

The first main test I had that narrowed it down further was a serum ACE test. It was high, and even though it can be high in other things also, with my symptoms it did at least give more credence to Sarcoidosis. I first seen an Oncologist because you can't differentiate between Sarcoidosis and Lymphoma without some kind of biopsy usually. The Oncologist then referred me to a Pulmonologist, to do a bronchoscopy. But he wanted to biopsy the lymph nodes to rule out lymphoma completely, but it turned out the lymph glands were not biopsy-able without open chest surgery. So then we decided to do the bronchoscope, they weren't that confident they were going to find anything in the lungs themselves the only thing they could see on the CT scans inside the lungs was "peribronchial thickening" which they were sort of dismissing as being from reactive airway from smoking. Finally I had the scope, and it ruled out fungal, and TB infection, and showed the inflammatory giant cell granulomas of Sarcoidosis. Wow!

A good place to look up Sarcoidosis is on the Foundation for Sarcoidosis Research website:

          http://www.stopsarcoidosis.org/sarcoidosis/diseasefacts.htm

So in conclusion many of the "autoimmune diseases" mimic each other, and with Lymphoma, being on the table, it would be best to get some kind of biopsy done. But a serum ACE test in the meantime would be helpful. Also with me they tested LDH. They also thought about doing a PET scan, but I never ended up having to do it, it's supposed to be used for detecting cancer I guess.

          http://www.labtestsonline.org/understanding/analytes/ace/test.html

          http://www.labtestsonline.org/understanding/analytes/ldh/test.html

Let me know if you have more questions, and take care.
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