Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Went to the Mayo

I promised I would update everyone after I went to the Mayo Clinic in Scottsdale.
First I saw a Rheumatologist who certainly was nice but I didn't think she was very thorough. Didn't want to see my M.R.I.s only the x-rays I had two months ago. Said she didn't see any active A.S. and no fusion. I asked her why then would my surgeon tell me that my neck was almost completely fused after looking at my M.R.I.s and she said she didn't know. She told me that she didn't know for sure if I had A.S. or not! Good grief, if you can't tell me who could! Sick of Dr.s telling me I have it and then getting my dx taken away or told they don't know!

She did send me down to the eye clinic to see a Eye Specialist. I felt some Uveitis brewing on Friday and started my drops protocol on Sunday. He was glad I did that and will see me back in two weeks and wants me to see a Uveitis Specialist there too. Never knew they existed. So that was my positive take away at least.

Left feeling very confused and not very validated.

Sorry to hear about the rheumy's response. It would upset me if that happened to me.
I think it would be so hard to be a rheumy, every person that comes o talk to you complains, it must really be hard for them too. My rheumy had us fill out a worksheet about our ra pain and stiffness, so we were communicating well.
I am glad you have someone helping your uveitis, that is goo

Hi Pea,

I have similar experience. For the past several months I am in a bad flare. On every visit to my rhuemy, after clinical examination and blood tests, he says I am fine and no active inflammation. I insists that I am unabale walk even 300 m and my mobility is restricted and unabale to do exercises. In fact my ESP is 1 mm after 1 hr and CRP is 2 (last week). I really do not know how to proceed further. I am on 2 vials of Remicade and he adviced to take 3 vials and taken the infusion. Waiting for the benefits.

Jay

Pea- so sorry you didn't get the visit you expected at Mayo. I went for a second opinion on my diagnosis years ago and was told I didn't have AS so I went back to my first Rheumy who gave me the proper diagnosis. My Rheumy and I laughed about it and thankfully he didn't hold a grudge. I did feel angry and upset for a short time after my visit with the second Rheumy but laugh about it now

Glad you got a referral to an eye doc. Hope you can laugh about your experience real soon.

Shari

Sorry this has happened.....it's happened to me also and I find it very upsetting. I don't get it (((hugs)))

Sherri

Hi Pea,
I must have missed the news, I didn't know you were going to see a doctor. I was wondering if you had moved to Arizona.
She is correct...She doesn't know.
iwas under the aassumption that mayo doctors " knew "
I am glad I never went, because I know I have it, Taken every pill under the sun at one time or another. I don't think they could prescribe anything but a miracle.

My local rheumy is convinced I have A.S. She will not even discuss with me any other possibility. I saw another one at Mayo in MN and he was not as convinced. He thought I might have a more general spondyloarthropathy. I didn't find him invalidating, but it was a little confusing. Still I do have some fusion in my right SI joint and I think AS is the likely correct diagnosis and again my regular rheumy is absolutely convinced (her husband also has AS...she stays up with it).

To make things more confusing, Mayo diagnosed me with Crohn's, but my regular GI doesn't agree. He believes I have eosinophilia and that it might even be what is the underlying cause of ALL of this!

Not long after I got back from Mayo, I gave up on having to have the right name for everything that ails me. Whatever I have is an autoimmune disease that is as unique as my own body. Yes, my symptoms fit within the parameters of certain named diseases and that's helpful for treatment purposes, but I've learned not to get too attached to a particular name. After all, they'll probably change it again!

Hang in there! I think Mayo is top notch, but it still comes down to the actual doctors. Sorry yours was disappointing.

Thank you all for your comments, they really help. I knew I could come here for validation. I went there just to see if there was anything else could be done to slow the progress not for a dx. That I already had so it was useless except for finding an eye doc.

Now I have to find another Rheumatologist. I found one after we moved here to Arizona. Yes we did get moved Elmer and I feel so much better and can move much easier. I needed to get back on my Remicade. This Dr. was in the red on bedside manner and also told me by looking at xrays only that I don't have it. I tried to ask her questions but she talked over me. She was intentionally mean. She did let me continue Remicade due to the fact that I get Uveitis. I never want to go back there so now the hunt is back on. So exhausting.

At least with my pain pump, I no longer have that horrible bone pain. I suffered way to long for them to take away my dx.

Sherri, sorry that you experienced this too. It is upsetting! Jay how come your not on a Medrol pack for your flare? They get me out of one quickly. Winter, glad you have one good Rheumy! That's awesome! Valsmom, I didn't even get a chance to complain. She was at least nice. Sorry you got the run around too David. I hear so many stories like this.

This pretty much sums up the problem:

https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=505367#Post505367

Rheumies don't know how to diagnose this disease. They just don't. And the rheumies who only try to fill check boxes in order to diagnose, almost always miss it. Good doctors use case history, experience, and instincts. Unfortunately most doctors these days, especially the ones affiliated with large schools and medical research try to go strictly by the book and that approach just doesn't work because at the moment, the book is wrong.

Pea - sorry your hunt is back on for a new Rheumy. My old Rheumy retired so I have a new Rheumy again. Bedside manner is not as good as my last Rheumy but he is doing a good job treating my disease and putting up with me so he is a keeper. I would ask one of your docs to recommend a good Rheumy.

Glad you no longer have bone pain. Don't worry, a better doc is out there and you will be getting better care soon.

Shari