Appointment at Mayo Clinic in Rochester

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Appointment at Mayo Clinic in Rochester

Post by AbsolutelyFab on Wed Jun 24, 2009 12:41 am

Hi, everyone! I hope you are all doing well!

I finally made the decision to contact Mayo Clinic in Rochester, Minnesota. My GP and rheumy here are wonderful, but I am still having so many symptoms without any relief in sight, plus because of my family history, I figured it would be faster to have a whole group of specialist look me over in the space of just a few days....get all the testing done...and be done with it. (My father is currently being treated at Mayo for non-agressive prostate cancer and he says the docs and staff are amazing!)

I am having the horrible pain and swelling in my salivary glands again, plus worse headaches, dizziness and heart palpatations. My family has a history of Hashimoto's hypothyroidism and non-Hodkin's lymphoma. All of these are autoimmune diseases. My rheumy has determined that my Undifferentiated Connective Tissue Disease is progressing into SLE and Sjogren's and Sjogren's can be related to both Hashimoto's and lymphoma. With my continuing and increasing symptoms I don't know if I should go to an Endocronologist, and ENT or my OBGYN doc...so if I go to Mayo I will be able to see any and all of these specialists in one shot.

I'm still waiting for the appointment to be scheduled but I will let you know when I have more info.

Hugs, sunny
Beth
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Re: Appointment at Mayo Clinic in Rochester

Post by Poppy on Wed Jun 24, 2009 5:50 pm

Hi Beth:

Good luck to you on your visit to the Mayo Clinic. I hope they will find some answers to your problems. I think you made a wise choice in going there and getting it all done at one time. It will be a relief to finally find out what's going on and how to treat it.

Best wishes and keep us posted. I love you
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Re: Appointment at Mayo Clinic in Rochester

Post by AbsolutelyFab on Fri Jun 26, 2009 6:36 pm

So I spent 50 minutes on the phone scheduling an appt at Mayo this morning. There must be a pretty high demand for rheumy's...there are no appts and they won't even place people on a waiting list. I could only get in with an emergency referral from my current doctors and I was told to call back in 3 months.

This isn't a problem as my joint pain & some fatigue seems to be under control with the mtx. So I didn get an appt to see an ENT for my possible Sjogren's. I have had very painful, swollen salivary glands for a long time and my regular rheumy suspects Sjogren's. The good thing about this is that my foot is in the door and if the ENT sees reason for it, he will be able to get me in to see a rheumy right away.

My appointment is August 3rd.

Hugs,
Beth
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Re: Appointment at Mayo Clinic in Rochester

Post by socalmonica on Mon Jun 29, 2009 5:15 pm

I too think that is a smart decision Beth. I think it will answer a lot of your questions that you have had lately. Keep us posted. I'm anxious to hear how it all goes.

Monica

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Re: Appointment at Mayo Clinic in Rochester

Post by AbsolutelyFab on Wed Aug 05, 2009 8:05 pm

The appointment at Mayo Clinic in Rochester went very well. I saw the ENT, Dr. Michelle Roeser. She was great! She confirmed Sjogren's and ruled out anything like thyroid issues or tumors, so it was worth the appt just to have peace of mind.

Even better, I got an appt to see Dr. Thomas G. Osborn, Rheumatology at Mayo Clinic in Rochester. If you go to the Mayo Clinic site at www.mayoclinic.com and look him up on the site. He has 53 medical publications, many of them related to lupus, methotrexate & raynauds.

That appointment isn't until August 17th. I'll fill you in then.

Hugs,
Beth
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Re: Appointment at Mayo Clinic in Rochester

Post by christines555 on Thu Aug 06, 2009 2:57 am

Hi Beth,

Well that is good news ruling out thyroid issues or tumors. Peace of mind is VERY important.

I am amazed that you were able to get a rheumy appointment so soon!! I'll definitely check out Dr. Osborn!

I am so glad things went well for you!! I love you

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Chris
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Re: Appointment at Mayo Clinic in Rochester

Post by AbsolutelyFab on Fri Aug 07, 2009 7:10 pm

Hi Chris,

Getting the referral from the ENT on related autoimmune issue (Sjogren's) was the only way I was able to get in to see a rheumy at Mayo. It is virtually impossible otherwise. They (Rheumatology) are booked out at least 6 months and they don't have a waiting list.

Hugs,
Beth
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Re: Appointment at Mayo Clinic in Rochester

Post by yardman417 on Sun Aug 09, 2009 1:21 am

flower flower flower for u Beth
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Update from Mayo Appointment with Rheumy

Post by AbsolutelyFab on Tue Aug 18, 2009 5:44 pm

OK, so like so many things surrounding autoimmune disease, uncertainty seems to be the most prevalent. Rolling Eyes

I had my appointment with Dr. Osborne, and his student, Dr. Jones, yesterday at Mayo. First, let me plug the Mayo Clinic....it is worth the cost of travel, hotel stays & meals at restaurants to go to the Mayo Clinic, Rochester, MN, if you can. I have never been to a clinic so efficient. Everyone is incredibly warm and patient...and when I say "everyone" I mean the entire staff, not just the docs. Not only that, but both the clinic and hospital do not have that frightening, depressing clinical feel. Although there are patients all over the place in varying stages of health and treatment, the entire place is infused with life! I don't know how they do it! There are lots of windows and skylights to let in the light, many gardens and places to relax outside, many fountains and beautiful sculptures.

The docs are incredibly thorough. I spent 45 minutes consulting with the student doctor, Dr. Jones. He then consulted with Dr. Osborne and they both came back and spoke to me for another 45 minutes. I was then set up, almost immediately for a UA, another blood draw and x-rays of my joints in the nuclear medicine department. All this in 1 day...no waiting...no scheduling of tests for days or weeks later.

So here's the dx: Like Dr. Gregory House always says "It's not lupus". I did not fulfill enough of the criteria to be dx'd with lupus, although I have many of the symptoms, again it comes down to the fact I have never had a positive ANA. This is not surprising to me as my rheumatologist here says the same. She says I have UCTD that appears to be "moving towards lupus and Sjogren's". Dr. Osborne did a Schirmer test and ruled out Sjogren's for now. So he went ahead and requested the super sensitive lab tests that determine other autoimmune issues such as Celiacs and Antiphosphilid syndrome. He also mentioned Nephrogenic Diabetes Insipidus.

He is sending the results to my rheumy here. I have an appointment with her on August 31. He also suggested I be weaned from the prednisone, the plaquenil and the methotrexate to see what happens. That concerns me a bit because I do believe it is helping me. If it helps figure out what is going on, I will do it, but will wait until I speak to my regular rheumy first. I also hope to prove to my husband that all my ailments are not due to age and weight gain. First of all, I am 12 years younger than him and all of my pain and fatigue appeared before the wait gain.

I should know more in another week or so.

Hugs,
Beth
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Re: Appointment at Mayo Clinic in Rochester

Post by Poppy on Tue Aug 18, 2009 6:23 pm

Hi Beth:

I'm so happy you had a good experience at the Mayo Clinic. It is so reassuring that you feel comfortable not only with the docs but the entire environment. Smile

I know it may not seem evident now, but at least you are getting some answers and ruling out certain things. I can understand you being concerned about getting off the drugs you are on now - it is a little worrisome that the pain may come back. I hope and pray that they will have some answers for you soon.

Please continue to keep us posted and I hope you start feeling better!! I love you
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Re: Appointment at Mayo Clinic in Rochester

Post by socalmonica on Wed Aug 19, 2009 3:38 am

wow, lots to think about. Well, keep us all posted. I'm glad the Mayo Clinic experience was a positive one.

Monica

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Re: Appointment at Mayo Clinic in Rochester

Post by AbsolutelyFab on Wed Aug 19, 2009 7:37 am

I forgot....the rheumy at Mayo also had a radiocative scan of all of my joints done by the Nuclear Medicine department. They inject you with a radioactive substance that will collect in any inflamed joint. I didn't get any info on how that looked as the radiologist said they won't be able to tell anything until the films were developed.
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