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Old 04-06-2012, 06:09 PM   #1
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Question Sarcoidosis & headaches but clear MRI?

My husband has been suffering from daily headaches for about 4 months. He also has numbness sometimes on the right side of his face.

His neurologist diagnosed it as migraines and put him on amitriptyline, gabapentin (neurontin), and has given him many different samples of triptan drugs. Nothing has worked and it's been a couple months. He's had 2 MRI's and an MRA, both have been negative.

A bit of background: He is 34 and had a heart valve replaced in 2010 (congenital heart defect). He had a severe bout of perforated diverticulitis last year and had to to have his sigmoid colon removed. While he was hospitalized for the colon surgery, an arrhythmia (irregular heartbeat) was noticed.

So, with all the headaches going on, we also decided to seek help from a new cardiologist. (long story, not relevant why). Anyway, the new cardiologist looked at the heart MRI that was done by the hospital back when he had the arrhythmia (September 2011). This new cardiologist saw "nodes" in his chest. (not mentioned in Sept!).

So he did a chest CT with contrast today and the nodes are still there, and he has said the most likely diagnosis is sarcoidosis. They will do a biopsy soon.

Sorry it took so long to to lead up to this, but here is my question: does anyone know if sarcoidosis in the chest or elsewhere in the body (but not the head) can cause headaches?

Or, is it possible to have sarcoidosis in the brain/head but have a normal/negative MRI? (none of his brain MRI's were done with contrast - could that be an issue - do you need contrast to see sarcoidosis in the brain?)

I did ask the cardiologist these questions but he said he honestly didn't know, and I don't blame him, this isn't his specialty.

While sarcoidosis is not a good thing, I'm hoping that if it IS what he has, it can explain the headaches.

Thank you so much for any help or insight you can offer.

 
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Old 05-08-2012, 10:52 AM   #2
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Re: Sarcoidosis & headaches but clear MRI?

Maybe I misunderstood your post but I assume they diagnosed Sarcoidosis because of the CT Chest w/ contrast. CT will show heart and lungs. I can't imagine Sarcoidosis without lung damage or at least inflammatory changes.

All autoimmune diseases can cause ILD and/or other lungs problems and Sarcoidosis is most known for lung problems.

My "new" headaches came from the inflammatory changes in my lungs. They do not respond to OTCs or migraine medications.

My recommendation is to find a good lung doctor (pulmonologist) who treats other patients with Sarcoidosis or autoimmune lung disease. Often there are respiratory therapies or immune-related medications that can help.

If the cardiologist doesn't know who to recommened try to get the CT report and ask the radiologist who read the film. He may know one.

Last edited by giveasmile; 05-08-2012 at 11:01 AM.

 
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Old 09-19-2012, 05:44 PM   #3
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Re: Sarcoidosis & headaches but clear MRI?

Quote:
Originally Posted by olive78 View Post
My husband has been suffering from daily headaches for about 4 months. He also has numbness sometimes on the right side of his face.

His neurologist diagnosed it as migraines and put him on amitriptyline, gabapentin (neurontin), and has given him many different samples of triptan drugs. Nothing has worked and it's been a couple months. He's had 2 MRI's and an MRA, both have been negative.

A bit of background: He is 34 and had a heart valve replaced in 2010 (congenital heart defect). He had a severe bout of perforated diverticulitis last year and had to to have his sigmoid colon removed. While he was hospitalized for the colon surgery, an arrhythmia (irregular heartbeat) was noticed.

So, with all the headaches going on, we also decided to seek help from a new cardiologist. (long story, not relevant why). Anyway, the new cardiologist looked at the heart MRI that was done by the hospital back when he had the arrhythmia (September 2011). This new cardiologist saw "nodes" in his chest. (not mentioned in Sept!).

So he did a chest CT with contrast today and the nodes are still there, and he has said the most likely diagnosis is sarcoidosis. They will do a biopsy soon.

Sorry it took so long to to lead up to this, but here is my question: does anyone know if sarcoidosis in the chest or elsewhere in the body (but not the head) can cause headaches?

Or, is it possible to have sarcoidosis in the brain/head but have a normal/negative MRI? (none of his brain MRI's were done with contrast - could that be an issue - do you need contrast to see sarcoidosis in the brain?)

I did ask the cardiologist these questions but he said he honestly didn't know, and I don't blame him, this isn't his specialty.

While sarcoidosis is not a good thing, I'm hoping that if it IS what he has, it can explain the headaches.

Thank you so much for any help or insight you can offer.
Hi my son had an ear ache then headache and suddenly a slight paralysis in the left side of his face. By the time we got him to the hospital there was the look of a possible stroke. After the CT and MRI they found spots on the brain and said there was cancer. Then after a brain biopsy there was no cancer and after 3 long weeks of testing and prodding 3 neurologist and 1 brain surgeon stomped came up with an otherwise healthy 34 yrs old had a case of sarcodosis. Still baffled I had never heard of sarcodosis in the brain but I do have 2 sisters with it in the lungs that have caused them heart and breathing problems. I would like to think this auto immune disease can be kept at bay by staying as healthy as possible. Eating right and vitamins and exercise and much PRAYER to the greatest DOCTOR of all The LORD GOD>

 
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Old 09-20-2012, 08:09 AM   #4
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Unhappy Re: Sarcoidosis & headaches but clear MRI?

Thanks all.

Givaasmile, my husband is now seeing a sarcoidosis specialist at National Jewish Hospital in Denver (supposed to be the #1 hospital for respiratory and related issues).

He still has the headaches.

The "probable" diagnosis is sarcoidosis but it still has not been confirmed. He will need to do a lumbar puncture in the near future.

He also had a sleep study (results not in yet) to check for sleep apnea, as that can cause headaches.

Lynnsmith, I'm so sorry to hear about your son. Best of luck with that. I agree with the nutrition, exercise, and prayer!

 
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Old 09-20-2012, 09:28 AM   #5
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Re: Sarcoidosis & headaches but clear MRI?

Sarcoidosis can be accompanies by inflammation in the blood vessels (inside lining) which can cause headaches. The implication of vasculitis can be documented by some blood tests, such as sedimentation rate, CRP, cryoglobulins, immunoglobulins, and complement levels. Sometimes vasculitis will show up on an MRA. You can have minimal vasculitis that is symptomatic, but doesn't show up, so the blood tests are helpful. If this is sarcoidosis, he will likely be put on Prednisone, which is the mainstay treatment for vasculitis and that may releive his headaches better than anything he has tried. In the meantime, Naproxen (OTC) is an antiinflammatory that may give him some relief coupled with something for pain that his Dr may prescribe. A rheumatologist normally treats sarcoidosis along with a pulmonolgist. It is an uncommon disease, relatively, so look for a pulm and rheum that have a special interest in sarcoid if the biopsies confirm that.

 
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Old 09-20-2012, 09:37 AM   #6
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Re: Sarcoidosis & headaches but clear MRI?

Just saw your post that you are in Denver (where I am). You are definitely at the best place for getting this diagnosed. NJH has the best specialists for sarcoidosis and also excellent rheumatologists to check out the vasculitis possibility. There are apparently only 6 recorded cases in literature of vasculitis with sarcoidosis, so please bring up that possibility to Drs there so it can be checked out as a source for the headaches! I would be interested to know what his serum ACE (angiotensin converting enzyme) level is. I think they will check that, as it is almost always elevated in sarcoid. You are in good hands (sigh of relief) and enjoy the lovely Denver weather!

 
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Old 05-15-2013, 07:19 AM   #7
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Re: Sarcoidosis & headaches but clear MRI?

Did they do the MRI with and without contrast? Before I was diagnosed with neurosarcoidosis, I had a clear MRI but once they did it with and without contrast, the MRI lit up.

 
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Old 05-15-2013, 08:12 AM   #8
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Re: Sarcoidosis & headaches but clear MRI?

Just wondering how your husband is doing now? It has been awhile since you posted.

 
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