Sarcoidosis

[af290]

Main questions:
1. Do I need a biopsy?
2. What stage of sarcoid do back pain and numbness indicate? Does this indicate a need for other treatment?
3. Can you recommend a Sarcoid 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 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 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 sarcoid but my doctor doesn't think all my symptoms are related to sarcoid.
My main complaint is the back pain. I have it nearly all the time. After reading the question segment of your website I see that other women have the same complaint of back pain under the bra line . 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 the biopsy?
Can you recommend a good sarcoid 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. Your website is helpful.

[Davy9]

The biopsy of affected tissues combined with the constellation of symptoms can be definitive for sarcoid in the absence of other diseases that might cause those changes. They can biopsy any type of tissue that is involved and often will biopsy more than one type of tissue. It is just part of the diagnostic process. As you probably know sarcoid can be nebulous in its presentation and individual symptoms can vary greatly. You do want a clear diagnosis.

There are sarcoid support groups all around the country and you should be able to locate one near where you live. There you can find more information, others with their particular stories and physician referrals.