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    Old 06-20-2016, 08:39 PM   #1
    amf1970
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    Please help - undiagnosed but definitely sarcoidosis

    Hi everyone,

    So I know the rules - you can't give medical advice. But I need opinions. And guidance. I am so afraid I'm in serious trouble here. Hopefully, things are about to take a turn for the better. But considering my symptoms, I'm really afraid of what COULD happen in the coming weeks.

    My current most severe symptoms:
    hypertension that has slowly increased in the last 6 years and spiked suddenly 6 weeks ago at 175/110 (docs trying to get it under control now with meds). Oddly, my chest became VERY visibly red (no kidding...I get comments EVERY day about my sunburn).
    tachycardic episodes with syncope/dizziness for 2 years
    lower back pain for the last 6 months (kidney labs all normal so far)
    shortness of breath with chest pain that started 6 weeks ago (about the same time my hypertension spiked). The chest pain is constant - feels like a I have a few little needles lodged in my heart/lungs.
    One hyponatremic episode that landed me in the ER a few weeks ago (they said it was due to overhydrating but I'm having similar "episodes" on a near daily basis (taking small doses of salt tablets to control it...which I worry is counterproductive for my hypertension but....better than hyponatremia). They've run labs, chest xray (nothing showed up which I guess is good!) and a kidney CT scan with contrast (normal).
    severe arthritis in hands/wrists/elbows/arms with on/off severe tremors
    chronic headache with intracranial hypertension (spinal tap showed high pressure years ago)

    So with these symptoms, I've been to the ER 3x...been to my GP several times...been to one rheumatologist. No one picked up on sarcoidosis. And then on Saturday, I took notice again of one small lesion on my leg. Now it's more defined (no doubt - it's annular sarcoidosis). Then yesterday, I remembered this little whitish growth I first noticed on my eyeball a couple of years ago...took a second look and was shocked to see it had grown...and now I have this growth in both corners of both eyes (spreads all the way to the iris in all 4 corners).

    I've been convinced I had something autoimmune going on for a few months. When I've asked the doctors why my chest is so red, they say premenopause. When I've asked about the shortness of breath, they say hypertension or asthma. When I've asked about the hypertension, they say genetic.

    I'm seeing an opthamologist tomorrow morning. I am HOPING that sarcoidosis lesions can be identified on exam or biopsy? PLEASE, can someone tell me if this will be another dead end? Is there a chance they'll look at it and say, "Oh, these kinds of lesions can be from a million different things."?

    My grandmother had congestive heart failure at 29 years old due to "plaque" buildup in her arteries. I haven't read anything about this being hereditary but the crazy thing is, I've been digging into my family health history and the number of relatives that have suffered from autoimmune-related issues is shocking. My uncle had rheumatic fever. My mother, 2 cousins, aunt all have COPD (non smokers except my mother). My other cousin needed FIVE bypasses at age 42 due to clogged arteries. My mother suffered severe muscle weakness/tremors and odd CNS symptoms (eye rolling). My ten year old SON had weird episodes of eye rolling and "air hunger" that lasted for about a year when he was 5 years old (was yawning as if he couldn't get enough air, repetitively, for several minutes at a time). The breathing issue resolved but the eye rolling comes and goes.

    I can only imagine if this granuloma stuff is growing in your body, the damage it could do. That brings me to my next question. Do these granulomas go AWAY with treatment? Is that possible? Or, once they grow, can they remove them surgically?

    I've read that when there's heart involvement or CNS involvement, the prognosis is poor. Well...I'd like to know HOW poor. Does anyone know an online resource (i.e. CDC or NIH) that offers statistics on this? Just give me a hint on what to search for.

    Now that I finally have some symptoms that they can SEE, I want to ask SOMEONE to do some imaging....stick a camera down my throat or something, for crying out loud. I'm especially worried about my heart at the moment. I've started to think no one is going to listen until it's too late. The only sense of security I have is that all of the tests they've done recently have been normal:
    chest xray
    EKG (2)
    kidney labs
    heart enzymes
    CT with contrast of kidney

    Could you have buildup in your arteries without it showing up on these tests?

    I've also wondered if I need to be on blood thinners...considering.

    I have an appointment with a (2nd) rheumatologist for July 18th. I can't believe how long it takes to get in. I've also wondered if I need to go BACK to the ER again. I would if I thought these lesions might make a difference. But....somehow, I think they'd blow me off again. I have no idea if they'd consider them significant (actually, I have no idea why NONE of the doctors that have examined me ever bothered to shine a light in my eye). I'm seeing my GP AGAIN on Wednesday and want to ask for an MRI or something...but not sure of the best imaging to ask for...or how long it will take to get one scheduled.

    Lastly, I'll confess, I started taking prednisone (no script) two weeks ago to control my symptoms (I'm still bad off...but I am not exaggerating when I say this has probably kept me alive until now).

    I could use some guidance. This wouldn't scare me so much if I didn't have 2 small children. I don't know if I'm over-reacting. Or if I'm really a heart attack waiting to happen. Believe me - I know how crazy it sounds. Thank you all for being here.

    Amanda

     
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    Old 06-21-2016, 06:07 AM   #2
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    Re: Please help - undiagnosed but definitely sarcoidosis

    Amanda, I would agree you may have an autoimmune disorder. Sarcoidosis can be diagnosed by skin biopsy of a lesion. The one on your leg could be biopsies by a dermatologist, but I would highly recommend you ask for a lupus band test on the biopsy. Discoid lupus lesions are annular. The other test that may be helpful is a serum angiotension converting enzyme, usually high in sarcoidosis. Your symptoms could be explained by other autoimmune disorders, including the hyponatremia, if the pituitary is involved. You could have SIADH, secretion of inappropriate (excess) ADH, which causes your kidneys to conserve excess water and dilutes your sodium. I would want a thorough workup for common autoimmune diseases like lupus, RA, much more common than sarcoidosis and consistent with many of your symptoms. Please let us know what you find. Did anything show up on the tests the rheumatologist did? You can post those results if you'd like. I would go back to him/her if you liked the Dr. for follow-up. The eye lesions may be pterygium from your description. An opthalmologist should look at those for you.

     
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    Old 06-22-2016, 05:17 AM   #3
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    Re: Please help - undiagnosed but definitely sarcoidosis

    Hi Ladybud,

    Thank you SO much for responding. This is exactly the kind of advice I need. I need to make sure I get the RIGHT testing done. I'm afraid that since I started taking pred, these things will clear up and then I won't be able to prove anything.

    So I've been suffering pretty badly for a few months. 4 weeks ago, it was so bad, I have to be honest - I was completely incapacitated. I HAD to do something. This arthritic arm pain and trembling...wow. I could barely pick up a pen and definitely couldn't hold it still to even write.

    My biggest fear - not being able to prove anything.

    I've seen several docs recently. Convinced my GP to run blood for all kinds of antibodies. They were all negative. The only positive antibody test I've ever had was thyroid (both were quite high back in 2008 but didn't think much of it then).

    I had anemia as a child but it resolved. I've had various other symptoms in life. And now I have these lesions that, to me, look like annular sarcoidosis and ocular sarcoidosis.

    HOWEVER, I went to the opthamologist yesterday because of concern over these growths on my eyeball. The tech put drops in my eyes for the exam. The doctor comes in, examines my eyes and says "There's nothing abnormal". I was stunned. I asked her to humor me and look at a picture I took just the day before to make sure it's the same thing SHE is seeing. She looked at the picture and said, "Well I don't see that clear growth there now but everything else looks fine.". I asked if maybe the drops did something? She said no. But then I found out the drops they used are anti-inflammatory. And once I could actually see again, I looked in the mirror and it did look better. But you could STILL see the growths. So I have no idea how this could be normal. But she says it is. So that's discouraging. Wish I could post a pic here to get your thoughts (let me know if there's a way to do that).

    Had another crazy heart episode night before last. This one was NOT my normal tachycardic episode. Normally, my heart rate will sloooooowly start to speed up until it hits some ridiculous BPM max that lasts for about a minute or two....then slows back down to normal and is done. But this time, it sped up and then was more like crazy flutter pattern...up down left right round and round...like it was just freaking out....then subsided and I was fine. There was no pain so I am pretty sure it wasn't a heart attack. I was literally holding my phone in my hand ready to call 911. So I have no idea why I'm having these heart issues. I also have syncope. So it could be that my autonomic nervous system is screwed up (common in people with Chiari Malformation, which I am diagnosed with). OR it occurred to me that if I have narrowing of arteries from granuloma, that could cause problems. But no one will know unless they LOOK.

    So I want to convince someone to LOOK at my lungs and heart. But I'm having a hard time getting anyone to take me seriously. The frustrating thing about this is, I can have a solid 6 hours where I feel okay. Then I'll have 4-6 hours where I feel sickly (but still able to power through and function). Then I'll have a few really bad hours where I'm considering going to the ER...but then I don't because I know it will be pointless.

    So today I have appts with my cardiologist and my GP. Of course, doing to ask for all kinds of tests. Probably won't get more than a recommendation for a skin biopsy. I wonder if the dermatologist might be able to also do a scraping of my eye.

    Amanda

     
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    Old 06-22-2016, 05:43 AM   #4
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    Re: Please help - undiagnosed but definitely sarcoidosis

    Forgot to answer your other question.

    I have an appointment with a top rated rheumy on July18th (this guy books really far out). In the meantime, I'm just doing what I can to try and 1. keep my job and 2. address the individual problems I'm having (pain, arthritis, hypertension, shortness of breath).

    So I DID see another rheumy last week. Unfortunately, I had NOT thought about that little lesion on my leg before I saw him...or the little whitish growth on my eye. And he never asked about skin lesions (just rashes). So I checked "no" on the form. I told him about all of my other symptoms and he diagnosed me with Fibromyalgia and gave me a script for Cymbalta (to help with my anxiety and pain).

    So that was a total bust. He didn't even suggest blood testing. He flat out said, "You don't have an autoimmune disorder".

    Very discouraging

    Amanda

     
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    Old 06-22-2016, 12:49 PM   #5
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    Re: Please help - undiagnosed but definitely sarcoidosis

    Amanda, since you have shortness of breath, pulmonary function tests should be done to rule out asthma or other lung issues. The other helpful tests for heart would be a 24 hr Holter monitor to check rhythm and rate, and an echocardiogram to check heart valves and chambers. Many people with lupus, for example, have tachycardia and autonomic dysfunction. (I do). It is bothersome but not dangerous (other than syncope if it occurs). Your symptoms do NOT sound like an impending heart attack. I would avoid telling any new Dr. about being diagnosed with fibromyalgia. I think it raises a red flag, then they dismiss your symptoms and look no further. If you had high anti-thyroid antibodies in the past, then you have one autoimmune disorder, (Hashimoto's thyroiditis) and that makes another more likely. You should get your thyroid hormone levels checked too, at least yearly, to monitor for hyper and hypo thyroidism. I would try the Cymbalta. It works well for both anxiety and chronic pain, so may help you feel better. I take it for lupus and it helps me. Do you know what antibodies were tested by your GP? There are thousands, so knowing your tests would be helpful. Since this is chronic, I would start keeping a notebook of all your test results. Ask for a copy of labs to be mailed or emailed to you, or access to the patient portal of the lab itself. That is invaluable. Good luck with your appointments. I hope you get somewhere. The skin biopsy of lesions, with lupus band test, should be next on your list.

     
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    Old 06-23-2016, 01:33 PM   #6
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    Re: Please help - undiagnosed but definitely sarcoidosis

    Hi Ladybud,
    Yes, I have labs - will paste at the end here.
    So I am at wits end. Have been to my GP and the ER multiple times (yes, told them I'm afraid there's something autoimmune going on). I am not exaggerating - my entire chest and neck are SO RED. Every doc that looks at me gives me the strangest look and asks if I've always been that red. I then say, "No, it just started about the same time as my hypertension and shortness of breath...6-8 weeks ago...and I think it might be sign that something's wrong inside.". I've told them I think I have an autoimmune disorder. The moment I say that, they tell me it's premenopause. Finally convinced my GP to run the tests - all negative. I finally got in with a rheumy and he didn't even ASK about skin lesions (and I had forgotten all about them so didn't mention them). Then remembered them a few days later. I have two (yes, they are small). One is a dead ringer for annular sarcoidosis. The other...not sure what it looks like. Then there are these yellowish growths on the whites of my eyes (nearly spread to my iris). And they are RAISED. I saw an opthamologist on Tuesday and she said "it's normal". What?! Seriously? Again, not something I thought about until I started thinking about lesions.
    So I went to see my GP yesterday. I admitted to self treating with pred. Told her I don't care if people think I'm crazy...don't care if I kill my liver. All I need from her is to monitor my blood and tell me what's going on. Things have been so bad - I cannot even begin to tell you. But I still have pain. So I know this won't hold me over for long. And once she saw the lesions and and my eyes, she actually looked a little freaked out. I know she's on my side now. She finally believes me. But then she told me, "You have to come off the predinsone and let the symptoms surface. If you don't, you'll never get diagnosed.". And I know she's right. I WANT to come off it. But OMG...the pain is intense (arthritis everywhere). I told her I just need to FUNCTION. I am a single mom with 2 young boys and no savings. I CANNOT lose my job. So yes, she wrote me a script for Cymbalta (the idea being it will help me wean down the pred). I took one last night (20mg). Did NOTHING. I'll keep trying. I hope there's some wonder drug that can just block all nerve pain long enough for me to let it all surface. Oh...and believe me...it WILL surface. This is nasty.
    So here are my questions right now.
    1. Can you get a dx without a positive blood test if the lesion is made of histocytes (or non-caseating granulomas)? In other words, do the lesion results trump the blood test?
    2. I read online that radiologists can't really detect granuloma. Is that true? Would an MRI or CT scan be able to pick up inflammation? Or do they HAVE to do a biopsy?
    My gut tells me, if I have this STUFF growing externally (where we can see it) then chances are, it's growing internally too. My grandmother had congestive heart failure at 29 (YES, 29!) due to "plaque buildup" in her arteries. My uncle had rheumatic fever as a child and was covered in a mysterious rash in his 50's. My 42 year old cousin needed FIVE bypasses due to plaque buildup. Too much coincidence for me. I need to convince a doctor to take this seriously. I am having syncope. And tachycardia. Well...they just put me on metoprolol a couple of weeks ago and it's coming under control. No more syncope since starting the meds. But I still have some tachycardia. And there's a constant "ache" in my chest...almost like there's a tiny needle just lodged in there. I have an appt with a GOOD rheumy on July 18th (a long time away). I had a scary tachycardic episode Monday night. It was different than before. The previous ones would start and my rate would speed up in a linear way...hit a peak and then race at one steady speed for about a minute...then subside. Scary but always consistent. Monday night was not the same. This time is peaked and then seemed to flutter up and down all over the place, very erratic, for about a minute. It didn't hurt. So I didn't think it was a heart attack. But it felt like my heart was "freaking out". I went in to the cardiologist yesterday and told him everything. Showed him the lesion and eyes. Told him I'm concerned about sarcoidosis. I asked about a monitor and he told me to wait for the stress test I have scheduled in a week. Asked him if he could prescribe a blood thinner or vasodilator as a precaution. He told me, "Get the diagnosis first". Sigh.... Well that appt is a month away! So yes, I am scared of what could happen.
    If I have another wierd episode, I think I'm going to the ER. And I'm going to specifically ASK them to do a biopsy. Honestly, I think there's inflammation in my throat/esophagus as well. So they probably wouldn't have to go far! Maybe if I show them these new lesions they'll listen. I'm not even sure if they do biopsies in the ER...
    Not sure if you wanted to see ALL of my labs. So I'll just paste the antibody related stuff (all completely normal). ONE more thing I should add is...I have been on 50mg of hydrocortisone for years (prescribed for adrenal insufficiency). It's basically a weaker version of pred (pred is 4x stronger and stays in your system much longer...so 50mg of HC would be like 12.5 mg of pred per day). Not sure how this would potentially affect my tests. And I'm wondering if my GP wants me to also come off the HC....because THAT would probably kill me (I know I'm sounding dramatic here but seriously...yikes).
    C4+C3
    Complement C3, Serum 105 mg/dL 82 - 167 01
    Complement C4, Serum 27 mg/dL 14 - 44 01
    Antinuclear Ab Reflex Cascade
    ANA Direct Negative Negative 01
    See below: 01
    Autoantibody Disease Association
    ________________________________________ ____________________
    Condition Frequency
    _____________________ ________________________ _________
    Antinuclear Antibody, SLE, mixed connective
    Direct (ANA-D) tissue diseases
    _____________________ ________________________ _________
    dsDNA SLE 40 - 60%
    _____________________ ________________________ _________
    Chromatin Drug induced SLE 90%
    SLE 48 - 97%
    _____________________ ________________________ _________
    SSA (Ro) SLE 25 - 35%
    Sjogren's Syndrome 40 - 70%
    Neonatal Lupus 100%
    SSB (La) SLE 10%
    Sjogren's Syndrome 30%
    _____________________ _______________________ _________
    Sm (anti-Smith) SLE 15 - 30%
    _____________________ _______________________ _________
    RNP Mixed Connective Tissue
    Disease 95%
    (U1 nRNP, SLE 30 - 50%
    anti-ribonucleoprotein) Polymyositis and/or
    Dermatomyositis 20%
    _____________________ ________________________ _________
    Scl-70 (antiDNA Scleroderma (diffuse) 20 - 35%
    topoisomerase) Crest 13%
    _____________________ ________________________ _________
    Jo-1 Polymyositis and/or
    Dermatomyositis 20 - 40%
    _____________________ ________________________ _________
    Centromere B Scleroderma - Crest
    variant 80%
    _____________________ ________________________ _________
    Ribosomal P SLE 10 - 20%
    Rheumatoid Arthritis Factor
    RA Latex Turbid. 6.6 IU/mL 0.0 - 13.9 01
    Vitamin D, 25-Hydroxy 57.9 ng/mL 30.0 - 100.0 01
    Sedimentation Rate-Westergren
    2 mm/hr 0 - 32 01
    Magnesium, Serum 2.3 mg/dL 1.6 - 2.3 01
    Complement, Total (CH50) 42 U/mL 42 - 60 01
    C-Reactive Protein, Quant 0.6 mg/L 0.0 - 4.9 01

     
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    Old 06-23-2016, 02:48 PM   #7
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    Re: Please help - undiagnosed but definitely sarcoidosis

    amf1970

    The ER does NOT do skin biopsies, a dermatologist does. Be sure to ask for the lupus band test or the biopsy may be meaningless. CT scans can show up granulomas in the lungs, but would not be ordered unless something showed on chest xray. Sarcoidosis is rare and usually involves the lungs. I think you are putting too much emphasis on this diagnosis. The red chest and neck may be a "shawl sign". The skin biopsy does trump the blood tests.

    Last edited by Administrator; 06-23-2016 at 03:01 PM.

     
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    Old 06-24-2016, 03:05 PM   #8
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    Re: Please help - undiagnosed but definitely sarcoidosis

    Hi Ladybud,

    Well...I think you're right. Never heard of a shawl sign but when I look it up, it's exactly what I have.

    So now I have to ask myself what it means? It's obviously something bad(based on my symptoms). I have chest pain, tachycardia, syncope, hypertension, shortness of breath, yellowish growth on the whites of my eyes, one annular lesion, severe pain in my hands/wrists/arms, and since yesterday, my throat and roof of my mouth have become raw.

    I've read the shawl sign can indicate cancer. Or lupus. Or Dermatomyositis. Or even an infection (like TB). I emailed and called my doc this morning begging her to call the rheumy's office and get me in urgent. She blew me off (pretty much). I have to wait until the 18th. I'm definitely going to be out of work until then. And in a lot of pain. I just can't function.

    I asked her to order a CT scan. Read online that lung cancer doesn't show up on xray until it's well advanced. So with a shawl sign, they wouldn't bother to do a CT scan? Really? Well...with all of the other inflammatory issues I have going on, I'm not sure if that should make me think it's more likely autoimmune than cancer. Maybe the immune response is pretty much the same - cancer or no cancer. I'm still learning.

    I have 2 MRI's scheduled for tomorrow - one of my cervical neck and one of my lumbar (scheduled these a while ago for disc issues). I have a mammogram also scheduled. But I'm feeling like there's something more likely going on with my lungs/heart.

    Thanks again for being supportive. I sure need it right now.
    Amanda

    Last edited by amf1970; 06-24-2016 at 03:07 PM.

     
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    Old 06-25-2016, 12:50 PM   #9
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    Re: Please help - undiagnosed but definitely sarcoidosis

    Quote:
    Originally Posted by amf1970 View Post
    Hi Ladybud,

    Well...I think you're right. Never heard of a shawl sign but when I look it up, it's exactly what I have.

    So now I have to ask myself what it means? It's obviously something bad(based on my symptoms). I have chest pain, tachycardia, syncope, hypertension, shortness of breath, yellowish growth on the whites of my eyes, one annular lesion, severe pain in my hands/wrists/arms, and since yesterday, my throat and roof of my mouth have become raw.

    I've read the shawl sign can indicate cancer. Or lupus. Or Dermatomyositis. Or even an infection (like TB). I emailed and called my doc this morning begging her to call the rheumy's office and get me in urgent. She blew me off (pretty much). I have to wait until the 18th. I'm definitely going to be out of work until then. And in a lot of pain. I just can't function.

    I asked her to order a CT scan. Read online that lung cancer doesn't show up on xray until it's well advanced. So with a shawl sign, they wouldn't bother to do a CT scan? Really? Well...with all of the other inflammatory issues I have going on, I'm not sure if that should make me think it's more likely autoimmune than cancer. Maybe the immune response is pretty much the same - cancer or no cancer. I'm still learning.

    I have 2 MRI's scheduled for tomorrow - one of my cervical neck and one of my lumbar (scheduled these a while ago for disc issues). I have a mammogram also scheduled. But I'm feeling like there's something more likely going on with my lungs/heart.

    Thanks again for being supportive. I sure need it right now.
    Amanda
    I think your symptoms are consistent with an autoimmune condition. You need a thorough workup for those and it is important to try to distinguish your pain as to whether it is more muscular (between the joints) or in the joints themselves. Workup for autoimmune diseases are primarily blood antibody tests and skin biopsy with muscle biopsy if muscle pain, weakness and elevated CK levels to check for myositis. I would pursue this path rather than be looking for cancers, unless the whole rheum workup is negative. These are generally chronic conditions and rarely constitute an emergency.I would try to get into rheum sooner rather than asking for CT scans. Rheum is where the answers are, IMO.

     
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    Old 06-25-2016, 01:24 PM   #10
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    Re: Please help - undiagnosed but definitely sarcoidosis

    Hey Ladybud,

    I agree. I need a good rheumy badly. Asked my GP to make a call and try to get me in sooner. But...it's looking like I won't be seen til the 18th.

    Here's the problem. I think it's going to be VERY hard for me to get a positive antibody test. I had a positive thyroid antibody test in 2008. Shortly after that, I was dx with adrenal insufficiency and put on hydrocortisone (weaker but similar to prednisone). Started at a low dose: 25mg per day (10mg-10mg-5mg). But over the years, my "hypo" symptoms have worsened and my doc has slowly increased it to 50mg per day. I've been on 50mg per day for a few years now. I've TRIED to wean down the hydrocortisone a few times and would get terrible arthritis in my arms. So I just couldn't.
    So then my GP ordered the antibody tests and all were negative. I started taking the pred after that because my symptoms were literally unbearable (3x I've been to the ER).
    I've come clean with my GP about taking the pred. She says I have to come off it. Um...I assume she means I need to come off the hydrocortisone too??? Well...it supposedly can take a YEAR to wean off this stuff. THAT's not an option. Wait a year for a dx???
    So I just don't know what to do. I really need to be able to function. I HAVE to support my kids and keep my job.
    She gave me Cymbalta and it DOES seem to help a little with the arthritis (but not the tremors). If she can keep my arthritis and tremors in check, I may be able to wean off the pred (and hydrocortisone). But I'm not sure yet if that will work.
    So yes...I know the ER isn't the place to get dx'd. But the 18th is a loooong way away. And I'm not sure I should wean off the pred until the rheumy tells me to.
    Amanda

     
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    Old 06-26-2016, 07:09 AM   #11
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    Re: Please help - undiagnosed but definitely sarcoidosis

    Quote:
    Originally Posted by amf1970 View Post
    Hey Ladybud,

    I agree. I need a good rheumy badly. Asked my GP to make a call and try to get me in sooner. But...it's looking like I won't be seen til the 18th.

    Here's the problem. I think it's going to be VERY hard for me to get a positive antibody test. I had a positive thyroid antibody test in 2008. Shortly after that, I was dx with adrenal insufficiency and put on hydrocortisone (weaker but similar to prednisone). Started at a low dose: 25mg per day (10mg-10mg-5mg). But over the years, my "hypo" symptoms have worsened and my doc has slowly increased it to 50mg per day. I've been on 50mg per day for a few years now. I've TRIED to wean down the hydrocortisone a few times and would get terrible arthritis in my arms. So I just couldn't.
    So then my GP ordered the antibody tests and all were negative. I started taking the pred after that because my symptoms were literally unbearable (3x I've been to the ER).
    I've come clean with my GP about taking the pred. She says I have to come off it. Um...I assume she means I need to come off the hydrocortisone too??? Well...it supposedly can take a YEAR to wean off this stuff. THAT's not an option. Wait a year for a dx???
    So I just don't know what to do. I really need to be able to function. I HAVE to support my kids and keep my job.
    She gave me Cymbalta and it DOES seem to help a little with the arthritis (but not the tremors). If she can keep my arthritis and tremors in check, I may be able to wean off the pred (and hydrocortisone). But I'm not sure yet if that will work.
    So yes...I know the ER isn't the place to get dx'd. But the 18th is a loooong way away. And I'm not sure I should wean off the pred until the rheumy tells me to.
    Amanda
    If you truly have adrenal insufficiency you cannot go off the HC. 50 is a high dose though and could be causing the tremor as a side effect. Do you see an endocrinology Dr for this? This med and prednisone could suppress your antibody results. If on it a short time, depending on how high the dose, you could wean off it by the 15th or sooner to help your labs be more accurate. How was your adrenal insuffiency diagnosed? By whom? You have 2 autoimmune diseases already, a third would not be surprising. You can always call the rheum office and ask for a cancellation spot.

     
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    Old 06-28-2016, 02:10 PM   #12
    amf1970
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    Re: Please help - undiagnosed but definitely sarcoidosis

    Yes, I'm on the cancellation list. Appt with rheumy on July 18th.

    Now that you told me what a shawl sign is, I think Dermatomyositis is a possibility. I have heart and lung involvement (hypertension, tachycardia, shortness of breath, chest pain). It all came on very suddenly. The tachycardic episodes are pretty scary.

    The adrenal insufficiency was diagnosed by my endo 7 years ago. I started on 25 mg HC per day (equiv 6mg of pred). I'm now up to 50mg per day (equiv to 12mg of pred). The gradual increase in the HC began a few years ago with awful carpal tunnel pain. That pain gradually migrated up my arms. We gradually increased my HC. And it kept my symptoms under control. Now I think I know why. I don't think this has been adrenal insufficiency or hypothyroidism at all. I think it's autoimmune. The question is, which disease?

    Definitely not the HC or pred causing the tremors. EVERY time I try to lower it, I get the shakes/tremors really bad. And my arm muscles are SORE. I see my GP tomorrow and I'm thinking of cutting my dose in half tomorrow morning just so she can see how bad it is - but I'll be taking a taxi or getting a friend to take me. That is how bad it is. But I have also noticed my hypertension skyrockets when I lower. So I'm afraid of that.

    Considering my symptoms, I'm leaning towards Dermatomyositis or SLE. I tried to lower my pred dose yesterday and had another tachycardic episode (my hypertension is not yet well controlled and I think they have me on the WRONG type of meds). My GP started me on atenolol and amlodipine...she had it under control...then she decided to change it to metoprolol (low dose)...wasn't working so the cardiologist doubled my dose...still not working. Then I read that beta blockers aren't the best choice for connective tissue diseases. So I'm going to ask my GP to put me on something else. But I'm having trouble getting her to take this all seriously. She see's my indicators (annular lesion on my leg, shawl sign, hypertension, shortness of breath, fatigue, hashimotos, etc). But you know how it is - they want an "official diagnosis" before they'll do anything. Hopefully I can convince her to change my meds just based on what works.

    Oddly, my mother had a mysterious episode of muscle weakness about a month before she died. I woke up at 2am to this loud "bam"......"bam"....."bam".... Found her in the kitchen, completely incoherent, trying to fill a small pot with water. Every time it would fill, her arm would drop and the pot would hit the sink. She had shortness of breath for years. And a mild shawl sign. And hypertension. And we all blamed it on smoking. Now it's all making sense. Ambulance took her to the ER...doc was perplexed...gave her an IV and 2 hours later she was fine. I had an episode of hyponatremia a month ago (was having all of these other symptoms too). After the IV, I felt GREAT and my BP went down to 120/60. I told my doctor I was convinced it was the sodium. Now I'm reading that bicarbonate therapy is used for either Dermatomyositis or Scleroderma (forget which one).

     
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    Old 06-28-2016, 02:47 PM   #13
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    Re: Please help - undiagnosed but definitely sarcoidosis

    I would definitely ask for a CK (CPK) test to be done. It is a muscle enzyme that is elevated in lupus myositis (inflammation of muscles) and dermatomyositis, and correlates with muscle pain and weakness. It can fluctuate, so repeat levels may be needed. I have lupus myositis and my CK fluctuates between normal and high, and I can pretty well predict when it is elevated by how bad my muscles ache. I can hardly pick up a half gallon of milk at times, and almost drop things if I am not careful and use two hands. So that is a very helpful, easy blood test. Aldolase is also a muscle enzyme that is sometimes checked along with CK. As for BP meds, I am on a beta blocker (Atenolol) for tachycardia, Amlodipine (helps BP and Raynaud's) and an ACE receptor blocker (Losartan), and that has worked well. I think Metoprolol causes more fatigue than Atenolol, but the ACE drugs work well for high BP. and has protective effects on the kidneys if this is lupus. Stopping the beta blocker may cause the tachycardia to be problematic. This is tricky to get all the drugs right without causing untoward side effects. I have had lupus and RA, including myositis, for 35 years, and this was all figured out over a LONG period of time. Hopefully, the experiences you read here will help you get the help you need faster and without so much trial and error. Hope you get a sooner cancellation spot appointment! Keep us posted!

     
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    Old 06-28-2016, 05:02 PM   #14
    amf1970
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    Re: Please help - undiagnosed but definitely sarcoidosis

    So you've had heart involvement? How about lungs? For 35 years? I have to be honest, that's a relief to hear. This is so scary right now. I've been thinking the most morbid thoughts. Not sure if I will be here in a month. Wondering how BAD it has to get before someone figures it out. I assume if I finally collapse from muscle weakness, they'll do something. And I'm getting weaker. Very weak today. When I squat down to the floor, it's quite difficult to lift myself back to standing. Do you know if the muscle weakness/deterioration is always a GRADUAL thing? I'm wondering if I might just collapse unexpectedly. And what if I can't get to a phone? My two boys are usually at home but not tonight (I'm sure I'll be fine for another day...not sure about another 5 though). I am making it a point to keep the phone nearby. Geesh...was it ever this scary for you? Thanks again for listening!
    Amanda

     
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    Old 06-29-2016, 07:53 AM   #15
    ladybud
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    Re: Please help - undiagnosed but definitely sarcoidosis

    Quote:
    Originally Posted by amf1970 View Post
    So you've had heart involvement? How about lungs? For 35 years? I have to be honest, that's a relief to hear. This is so scary right now. I've been thinking the most morbid thoughts. Not sure if I will be here in a month. Wondering how BAD it has to get before someone figures it out. I assume if I finally collapse from muscle weakness, they'll do something. And I'm getting weaker. Very weak today. When I squat down to the floor, it's quite difficult to lift myself back to standing. Do you know if the muscle weakness/deterioration is always a GRADUAL thing? I'm wondering if I might just collapse unexpectedly. And what if I can't get to a phone? My two boys are usually at home but not tonight (I'm sure I'll be fine for another day...not sure about another 5 though). I am making it a point to keep the phone nearby. Geesh...was it ever this scary for you? Thanks again for listening!
    Amanda
    Yes I started my lupus symptoms with tachycardia episodes and have been on medicine to control that ever since. I have had serious problems with shortness of breath with exertion fort several years, partly due to asthma. These illnesses can come on gradually or suddenly, but people usually live for a long time, reasonably well if treated appropriately. I would try to get a head start with a CK level done thru your GPs office. That could jumpstart your diagnostic process. Takes 1 day to get results. Please try not to worry about dying. That's just not going to happen from this, and all the anxiety will just make you feel worse. You will get the help you need and feel better in time.

     
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