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Old 09-04-2010, 09:52 PM   #1
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Question Possible Sarcoidosis

I have a chronic cough and had a chest x-ray this week. My doctor said based on it he suspects possible Sarcpoidosis. I'm going in for a chest CT this week. Has anyone on this board had experience with this? I'd love to find out more so that I can be well prepared at my follow-up doctor's visit.

Thanks,
MountainReader

 
Old 12-02-2010, 09:06 PM   #2
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Re: Possible Sarcoidosis

My chest CT scan in September came back normal.

I had some bloodwork done for an unrelated health condition last month. My ACE serum came back at 356 (normal 4-60). I was re-tested a month later and my ACE serum result came back as beyond the capability of the lab to determine because it was too high.

My Neurologist who did the testing referred me to my primary care doctor. My primary care doctor said he had never seen this before and didn't know what to do with the information. He even consulted with two other doctors in his office who said the same thing.

Any suggestions for me on this? I know the ACE can be a marker for Sarcoidosis, but it could also be other things. I'm not sure if I should be concerned or not. Even my doctor said my readings were excessive.

 
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Old 12-06-2010, 04:21 PM   #3
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Re: Possible Sarcoidosis

This board seems pretty slow. There have been quite a few views though so I thought I'd provide an update.

I visited with my Pulmonologist today. He said that with my history of chronic coughing and the high ACE results I probably do have Sarcoidosis. He also said that he didn't recommend any treatment at this time. He doesn't even want to do any further testing to confirm the Sarcoidosis. He explained in more detail, but basically the testing and the treatments have more possible risk/side effects than the symptoms I'm currently experiencing.

He does want me to contact him if I develop any further symptoms. I follow-up with him in a few months for a routine visit so he'll be checking on the Sarcoidosis at that time as well.

In the meantime, I guess there isn't anything I can do but wait it out. He said form most people the Sarcoidosis resolves itself in about 3 years.

Last edited by MountainReader; 12-06-2010 at 04:22 PM.

 
Old 12-17-2010, 05:28 PM   #4
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Re: Possible Sarcoidosis

MountainReader: Thought I would try to get in contact with you since you were the most recent poster to this section. I have concerns about sarcoidosis and perhaps you have some answers. Please reply to this thread or the one above and I will go into further detail if you'd care to confer.
Thanks,

 
Old 12-17-2010, 08:47 PM   #5
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Re: Possible Sarcoidosis

You are right about this board being slow. People are reading the threads, just not responding.

I'm happy to chat with you about what I've learned with my doctors visits and ACE results, but I'm not sure I can offer much. It seems that unless the symptoms are severe, they don't really recommend much treatment since the medication side effects can be worse than the disease. Really kind of frustrating.

I haven't been able to get anyone to explain to me what really high results mean. I just know mine are pretty high.

I'm on here most days. Looking forward to talk to someone who might be experiencing some of the same issues.

MountainReader

 
Old 12-18-2010, 07:55 AM   #6
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Re: Possible Sarcoidosis

Your Sign on name sounds familiar, so I may have responded to you before, or visa versa.
My story (even the condensed version is long):
I have Lupus and Fibromyalgia, but they seemed to be in remission as of last year. I had a brain stem stroke five six years ago. Last Winter, I came down with an upper respiratory illness that no one else in my family got. Then had the H1N1 vaccine, then caught a cold, one right after the other. I recovered from each, but began having other symptoms. It took 6 doctors before we found out what was happening.

Apparently, my Fibromyalgia had gone into a big flare and my reactive hypoglycemia was really sensitive. I was having extremely low blood sugars and adrenaline would kick in and shoot my BS up causing my blood pressure to spike to very high levels and then return to normal. Very weird!

Each night I would wake chilling and sweating- shaking uncontrollably. My doctor also took me off one of my medications that could have contributed. There are other things, but I'll spare you the details.

They suspected a whole slew of things, and they did a CT scan to rule them out and that is the important thing because they found a solitary lung nodule and something on my spleen, presumably a cyst. I wasn't concerned because I had been so sick with the respiratory illnesses, I figured it was just left over from that. Well, they repeated the CT and now there are more lung nodules and they are growing plus there is some scarring. A PET scan was done that ruled out any cancer and suggested that the nodules were from a granulomatous disease.

So, my doctor did a cocci serology to look for Valley Fever, and an ACE test to check for sarcoidosis. The cocci test was positive and the ACE test was in the higher normal area. Three weeks later the tests were repeated, and it still showed that I had Valley Fever at one time, but the results did not give them any clue as to when. But, the funny thing is, I don't think he asked for the ACE to be repeated, but they did that too and the ACE came back even higher. So, I will repeat the tests again in 3 weeks.

The ACE test is certainly not as high as your values, it was only 67, the highest on the normal scale. But, if you have done any research on the internet about sarcoidosis, you have found out that you don't have to have a high level to have it. And, that increasing levels may indicate disease activity.

So, I have to get a repeat CT scan in February to track the progression of the growing lung nodules, and must get several cocci tests and an ACE to track their progression right after Christmas. And of all blessings, I'm not doing too bad. I am very tired, but with Lupus and Fibromyalgia, that is nothing new. I get a bit out of breath occasionally, but I have been less active because of the weather not allowing me out to bike ride.

I get this weird tingling feeling in my body, from the time I wake up in the morning, off and on throughout the day, and until I go to bed at night. It went away for awhile and now has returned. I have hot flashes that go in spurts, more some days than others, but none at night while I'm sleeping. I happen to be near menopause, so that may be contributing. But I take medicine that could be causing the hot flashes, too, and so can the Fibro.

With the low blood sugar, I must eat small frequent meals with a special diet, and my appetite is low. That is very different for me. I eat because I have to, and when I do, I can usually eat a fairly decent portion. I am losing weight, but slowly. I am going through a lot of stress right now, and things seem to bother me more than usual. With the fibro, my memory is bad, and that causes trouble in everything I do. My eyes went through a period where they were always red, but I wasn't sleeping and must take medicine for that. I have symptoms of interstitial cystitis, such as frequency and urgency and blood in my urine. And I have been having heart palpitations on and off.

So, now that you are up to date with my symptoms and history, I was wondering what your's was and if ours are similar. My niece is a nurse practitioner and she suggests that I see a pulmonologist, but right now is not a good time with the holidays and a child custody court date approaching. My doctor wants to take a wait and see approach. I go back and forth about this, obviously worrying. Not necessarily thinking that seeing the pulmonary doctor will give me any peace of mind, considering your post and a lung biopsy may not be possible since the largest nodule is only 12 mm. Don't know if they could find that needle in the haystack.

Any suggestions, opinions, or thoughts on this would be appreciated. I can't seem to find much about it on the internet that I don't already know. Hope I could get some insight from you.
Thanks,

Last edited by Sunsetnan; 12-18-2010 at 10:16 AM. Reason: added more

 
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Old 12-19-2010, 12:55 AM   #7
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Re: Possible Sarcoidosis

Hi Sunsetnan,

Having trouble sleeping recently so I'm up late. I know this will be long, but I hope it helps.

It is good to hear from you. I'm sorry to hear all you've been going through. It makes me grateful for what I do have.

I've popped in on the Lupus and Fibro board some lately. I don't have a diagnosis for either, but I do have signs and symptoms that lead me to believe they are possibilities in the future. I just don't meet all of the criteria yet but have symptoms increasing each year. I know something autoimmune is off.

This Sarcoidosis thing is pretty new to me and I've had trouble finding out much about it on the internet.

Most of my symptoms have been attributed to other things I was previously diagnosed with. It gets a bit frustrating because it has worn me down over the last couple years. I still think there is more going on than I know about.

I have had flares of a chronic cough on and off for about 6 years now. They typically last me about 3-4 months and occur a couple times a year. I've been diagnosed with asthma and reflux that severely irritates my lungs and throat. Problem is that my asthma appears to be under control with treatment the majority of the time. When I start coughing treatment isn't working any more. I began coughing last July and it didn't resolve until about the end of September. When treatments didn't work, they had me do a chest x-ray. It came back "concerning" and my doctor suspected Sarcoidosis. I then had a CT scan a couple days later that came back normal. He left it at that and attributed the cough to my other issues. He put me on really high dose Prednisone for 3 weeks. I've been on Prednisone fairly frequently over the years, but this time I had horrible side effects and couldn't function. Eventually the cough resolved. My current problems started a couple weeks later.

I had a flu shot at the beginning of October. A couple days later I came down with a severe headache. Nothing helped for the headache. After a couple weeks, I ended up at a Neurologist. He said I had probable Viral Menengitis that was triggered active when my body was adapting to the flu shot. Just to be sure it wasn't something else, he did a ton of bloodwork. I came back abnormal on my liver function, ANA (1:640) and ACE (356). I also have had 5 MRI's of the head and neck. I repeated the bloodwork 6 weeks later. My liver was normal, my ANA was down (1:160) and my MRI's were OK. (Well, they showed something, but no change over 2 months so they said it might be an old trauma.) It was my ACE that was so high the lab couldn't put a number to it. He was concerned about this so he referred me back to my PCP and Neurologist.

My PCP just doesn't know what to make of it. A high ACE by itself doesn't mean anything necessarily. He wants to monitor my bloodwork.

I decided to visit my Pulmonologist since 90% of people with Sarcoidosis have lung issues. I typically see him every 6mos- 1 year since January 2008. I'd had a visit with him in September when my cough was resolving and he had done a thorough history. It was an interesting visit this time. He looked over the labwork I'd brought over. He said that with my history and the high ACE there was a high likelihood I have Sarcoidosis. He said the only way to truly confirm this was through a biopsy but that he didn't recommend it right now because of the invasiveness. He discussed treatment with Prednisone and Chemo drugs. He went through all of the benefits and side effects of each one. He then said that because the side effects of all of the drugs used for Sarcoidosis he didn't recommend any treatment right now. He said the treatment would be worse than my current symptoms. I go back in March for follow-up x-rays and bloodwork. I have a feeling that I'll be visiting him about every 3 months for monitoring for a while. He did go through a list of other symptoms and said to contact him the second I noticed if they developed.

In looking at your story, it is interesting. I've been tested for TB pretty much yearly due to my symptoms. They always come back negative. I've never talked to my Pulm about Valley Fever though. I do have some lung scarring that is old but he said it is typical for people who grow up in a certain area of the midwest where I did, though atypical for where I live now.

From what I've read, about 50% of the time, people with Sarcoidosis have a normal ACE. I haven't been able to find anything on the differing levels of "high" 'ACE results though. Is high just high or does an extreme number mean things are even worse? I don't know. My doctors didn't really seem to know either. (My Pulmonologist was more "impressed" by my recent reflux tests my ENT did since my results there were extremely severe.)

Do your doctors have any answers for your tingling? I've had numb ears and nose since last May. I've been to my PCP, ENT, TMJ specialist and Neurologist and they all say they have no idea. If it was one sided, they said it was probably the trigeminal nerve, but my numbness is bilateral. I've now had 3 doctors tell me it happens sometimes and should resolve itself. It is still disconcerting. It has been 8 months now.

You asked about my symptoms and I've told you a story without answering. The answer is that I don't know. This is new to me and I don't know which of my symptoms might be related to Sarcoidosis or to other problems I'm having. From what I've read, Sarcoidosis can be in any number of organs.

I'm sure I'll forget something, but some of the things I've been dealing with over the last several months/ year are: chronic coughing, acid coming up into my throat in gaseous form, alternating IBS, asthma triggered by the acid, muscle spasms/tightness/tenderness with my cheeks/jaw/neck/shoulder/low back, bursitis of my hip, tennis elbow, numb nose and ears, dermatitis, eczema, recent anemia and low B12, being worn down in general and having trouble focusing. I've actually been on medical leave from work since that headache in October. My FMLA has run out though and I have to go back Monday. I'm a bit worried there since things are very stressful at work now.

It sounds like we are both in a wait and see mode right now. I'll keep you updated if I learn anything new. I go back for my next round of bloodwork in about a month.

 
Old 01-03-2011, 06:31 AM   #8
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Re: Possible Sarcoidosis

Just got back to the boards from an extended holiday. Wanted to thank you for your reply. Had my most recent blood tests last Wednesday, so should get the results this week. For some reason, the doctor's appt to go over the blood tests was scheduled for next week. I need to call them today to see if I can change it to this week.

No new symptoms. The heart palpitations seem to come and go, and they have been less lately and the tingling and hot flashes are a little worse. I will not have any all night, but the moment that I wake up in the morning, I will start with this tingling thing and then a hot flash starts. I don't know if they are related to menopause or something else. But, once I get hot, I throw the covers off, and then I generally can't get back to sleep.

The hot flashes and tingling thing started when I got sick last year, so unless it is just a coincidence, I would suspect it is all related to the FMS. FMS can make menopause worse, so it could be all interrelated. I don't mention the hot flashes and tingling to the doctor anymore. They seem a minor thing, and I live in fear that he'll consider it trivial and won't take me seriously when there is something really wrong.

I'll update you when I know something new.
Best Regards,

Last edited by Sunsetnan; 01-03-2011 at 06:33 AM.

 
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