newly diagnosed

[Kay]

I wanted to say hi.  I was just diagnosed with clippers this week, doing lots of reading and trying to understand this illness.  I was diagnosed with Temporal Arteritis with Polymyalgia Rheumatica last year and have been on prednisone since May 2018.  I started falling and having issues with walking, swallowing, vision and strange smells.  They did an MRI at Loma Linda and the neurologist had only seen one other case, but recognized it right away.  The other neurologist had never seen it or heard of it.  I am thankful I saw the doctor I did or I still would not have an answer to these crazy symptoms.  I was stated on prednisone 60mg last year and have tapered down to 12.5mg and they had started me on methotrexate weekly for my temporal arteritis in February 2019.  They are not changing my meds right now, I will be starting physical therapy to help deal with the ataxia and falling.  

[BillCrum]

Hi Kay,

Thanks for your post and sorry for the tardy response. I'm sorry you have joined the "CLIPPERS Club" but hope you have found some helpful information here. Even in 2019 the whole area of CLIPPERS is rather murky, but there is a lot more awareness than 10 years ago.

It's interesting to hear about your temporal arteritis diagnosis as that's one I haven't heard of before. Having just looked it up I expect it was also on the list of things they crossed off when I was being diagnosed in 2011. I never knew there were so many of these conditions until I went through the medical system myself.

I hope you have positive outcome with your treatment and therapy.

Best Wishes

-Bill