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DiscussionAdjusting to life with temporal arteritis
Polymyalgia Rheumatica (PMR) | Last Active: Jan 13 9:52am | Replies (217)Comment receiving replies
Replies to "So I had the Ultrasound on my arteries yesterday. They had the results posted on my..."
@amptrooper can you get a second opinion? I would be asking the doctors if it's all normal then what is causing these symptoms. I agree with @soteloli - don't give up. If they are not helpful then I would be looking for another doctor.
I somehow lost the post I had been writing you. Having a normal biopsy doesn’t prove that you don’t have GCA. I had been on prednisone for a few weeks before they scheduled my biopsy so mine also came back as normal . My rheumatologist said that the clearest sign that I had GCA was that within a a few days of being on prednisone I felt so much better. Hang in there and if you feel like the doctors aren’t listening make an appointment with another one. Having a good working relationship with your doctor can help you get through a lot of the ups and downs
Sorry if I posted twice on this. I just can’t find the first one
@amtrooper....how frustrating! Just a thought. Look up trigeminal neuralgia and see if you share these symptoms. Type one presents with electric type shooting pain. Type 2 is an awful ache caused by the nerve, which has 3 main branches, with many branches off the three. Affects the jaw, teeth, cheek, eye and brow, forehead and scalp. Something to consider. Oh and may not affect all areas mentioned...but may. JMJ
@amptrooper - I understand what you are going through. I kept going to doctors in Orlando and no one knew what was wrong with me. Finally my husband took me to the emergency room at Mayo Clinic in Jacksonville, FL. They diagnosed me in 1 and 1/2 hours and the biopsy was scheduled the next day. Do not give up. Remember that this can cause blindness. Have you had the Sed Rate and CRP. My Sed Rate was only 38 and they believed that I had a really bad problem. Do you have a really bad headache. It is interesting that you had an ultrasound. The Neurologist that was taking care of me said that an Ultrasound would not show anything. Where do you live?
@amptrooper - I tapered off of my Prednisone in October and around Thanksgiving I started having jaw pain. I got in touch with my Neurologist thinking my GCA was back. They did the testing and my tests (Sed Rate and CRP) came back normal. They told me to see my Internist. After seeing her, I asked for a referral to an ENT because of the jaw pain. The ENT decided I had TMJ and told me not to chew on the side that hurt. My pain is now discomfort that I can live with but I read online to use ice and heat and message in front of the ear. You might want to see an ENT for the jaw pain. The ENT said they could refer me to a Maxillofacial surgeon. I said I did not want surgery but they said the doctor does more than surgery and would just diagnosis and help with the pain. Mine is getting a little better with the ice packs and heat and massage in front of the ear. Mine is just on the right side. I also went to my eye doctor because of pain in right eye. She said everything looked fine. I don’t know if you have seen an ENT.
Please don’t give up. If it is temporal arteritis the consequences for going untreated can be devastating. Also I hope you can seek a second opinion. I see someone else warned you about not relying on a ultrasound. I was also told that an ultrasound would not show if you have this disease. I was told that a biopsy is the only definitive way to diagnose this problem. Best of luck to you
Don’t give up , you could request for a follow up and they can refer you to further testing with perhaps another Specialty or different testing