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Sarcoidosis

What Does My Back Pain and Numbness Indicate?

05/27/2008

Question:

Main questions: 1. Do I need a node biopsy? 2. What stage of sarcoidocis does back pain and numbness indicate? Does this indicate a need for other treatment? 3. Can you recommend a sarcoidosis specialist in MA?

I am a 53 year old woman with Raynauds, hypertension and rosacea. For 7 weeks I`ve had back pain across the mid back. First 3 weeks of pain were accompanied by numbness in the abdomen and in my back extending from the waist to under the breasts. Numbness occured in both hands and under arms at first, but is now limited to 3 fingers on the left hand. I had abdominal discomfort mostly in the first 4 weeks. (upper left) CAT scan of abdomen was normal.

Tests: PET CT showed extensive adenopathy throughout the mediastinum including right and left paratracheal, aortopulmonary window and subcarinal locations with marked FDG uptake. No pleural effusion, no focal lung nodules or masses, no axillary adenopaty, no neck involvement. All other areas of body normal. ACE blood test 72. All other blood work is normal. I`ve had brain MRI, back MRI, chest CT, abdomen CT. All showed normal. Pulmonologist felt chest CT showed sarcoid. Ordered the PET.

I was recently diagnosed with sarcoidosis but my doctor doesn`t think all my symptoms are related to sarcoidosis. My main complaint is the back pain under the bra line. I have it nearly all the time. I`ve been using tylenol 3 with codeine at night for 6 weeks due to this pain. Other drugs include 5mg Norvasc, flexoril, naproxen and topical metrogel.

My pulmonologist feels 98% sure there is no cancer. He suggested a biopsy though. He talked about prednisone, but is waiting.

What do you think of getting node biopsy? Should other tests be done first Can you recommend a good sarcoidosis specialist in Massachusetts. I`m 1 hour from Boston. What does the back pain and numbness indicate? Docs here cannot explain. Back MRI shows nothing.

So sorry to bother you, but I`m desperate. Thank you for your time.

Answer:

The diagnosis of sarcoidosis is not certain unless biopsy material is available. There are other causes of lymph node enlargement that can present in this way. Patients with sarcoidosis often have unusual chest or back pain. However, the loss of sensation is not typical, unless there is some involvement of the nervous system, which is not supported by the imaging tests. The numbness you describe in "3 fingers" may relate to another cause (e.g., carpal tunnel syndrome).

If the diagnosis of sarcoidosis is confirmed by biopsy, it makes sense to see a sarcoidosis specialist. Boston College has a sarcoidosis clinic that is directed by Jeffrey Berman.

 

For more information:

Go to the Sarcoidosis health topic, where you can:

Response by:

Elliott D Crouser, MD Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University