Monoclonal Gammopathy & Granulatomus Disease + new ANA+ in AZ

Is your grantulomus sarcoidosis? I’ve been diagnosed with MGUS (1/22) and pulmonary sarcoidosis (5/22) and looking for others. It’s a very very rare combination. I’ve had no follow up appointments or concern from any dr but my PCP is sending me to see a hematologist oncologist in June just to make sure nothing more needs to be monitored.

Greetings. So sorry you are having trouble finding a clinical home. I don’t know Scottsdale but I am in Little Rock and had similar trouble getting initial assessment by a hematologist/oncologist. My PCP is at the med school here and is competent. She made a referral to the USMS (med school) Multiple Myeloma Institute. I waited and waited. No callback. She called. No callback. PCPs know alittle or nothing about MGUS I am finding. You really need a hematologist/oncologist.
My anxiety was high. I consulted with Dr Google which is always a bad idea and became more anxious. It was making me actually feel sick.
I asked around and referred myself to another Cancer treatment facility. They appointed me and I was in to see a very competent hem/onc doc within two weeks.
MGUS is a watch and wait disease. You will likely have blood drawn, a 24 hour urinalysis and perhaps a bone biopsy to confirm the MGUS. Your doc may order CT scans to make sure you have no bone anomalies. Then quarterly or every 6 months, you will have blood draws to see if your disease is progressing. The data is on your side. Most MGUS does not progressed to multiple myeloma. Yay!
If my numbers go up into a range where treatment would be considered then I would make an appointment at Mayo or MD Anderson. Neither is close for me but I would want a second opinion.
If your local cancer treatment centers are saying that they don’t have capacity to serve you, that is very sad indeed. You do have Mayo Clinic in Phoenix.
I don’t know if anybody on this board is from your area, but there is a MGUS Facebook group which has a gazillion members. There may be somebody in that group that receives services in your area that can give you some guidance about local physicians.
I know nothing about your additional diagnosis. But I bet you there are people who do…

Best wishes. Let us know what happens.
Patty

Thank you for responding! My initial diagnosis was/is MGUS & Granulatomous Disease (GD) w/o taking other symptoms and history into consideration (pending) such as presence of lambda light chains, multiple benign nodules (1 calcified), Acute on Chronic Hypoxic Respiratory failure; Spinal Cord Injury (cervical, incomplete) resulting in Quadraparesis; stage III Kidneys; Osteomyelitis; Pneumonias; Pleuritic Rub; Diabetes II (and more). I was referred to Hem-Onc up here in Prescott bc Mayo didn’t have openings, waited 6 months for new patient appt.. only to miss it due to fam emergency (grandson). I can’t wait another 6 months. 😢 I need answers! Sound much like you? May I ask who/where you were referred to for Hem/Onc and how long it took to get you in?

Thanks Patty, it never rains but it pours. Right? My anxiety is increasing exponentially 😕 (see my response to Sue). I wanted an appt at Mayo but they’re at ‘capacity’ so Lord knows when I could get an appt there. I forgot to mention my lifelong ANA neg turned ANA pos pretty much overnight so need further testing in genetics, immunity, neurology, rheumatology, dermatology etc., to specify which which auto- inflammatory disease I’m harboring. The list just keeps growing! I’ll do my best to update.. you guys are awesome.

I’m so sorry. Yes you have had quite enough rain. I will hope for the best for you and yes, do let us know how it goes.
Patty