Mayo Clinic Day 4: Waiting

This morning I had an appointment with the Rheumatology department. I saw a resident who seemed to think quite highly of himself as he introduced himself: “I’m a SENIOR resident…” The way he asked leading questions proved my theory. At the end of his questioning period, he said there was no correlation with my positive ANA and any connective tissue disease. I breathed a sigh of relief. I don’t have lupus. The attending came in and followed up. He decided to test me for a couple of other disorders based on two small red spots on the inside of my hand. Blood work pending. He also said that my ANA could be positive due to the auto immune thyroid disease they found earlier this week. The attending asked me if I would be interested in participating in a study regarding patients with positive ANAs who go on to develop connective tissue diseases later in life. I agreed. They just draw a little blood and test my DNA for clues to my future health. I appreciated this attending. He was friendly, thorough, and humble (as opposed to the resident I’d seen earlier).

After Rheum, I went to get my blood drawn: The two diagnostics the Rheum physician ordered, as well as the blood for the two research studies I agreed to.

Immunology is the last specialist I need to see. My appointment is not until Monday. We went to wait to see if we could get in early. This process is known around the Clinic as “checking”. If someone cancels last minute or is a no show to their appointment they pick people that are waiting in the order you “checked” in. We waited until 2pm today until they sent us away.

Came back to the room and crashed. (Crashed right after a mini breakdown). Still frustrated the nerve block didn’t work. Still frustrated I don’t have answers to my back pain that has been plaguing me since November.

Need to look on the bright side: As mentioned before, they discovered an auto immune thyroid disease that will be of benefit for me to know earlier rather than later–before my thyroid function decreases to dangerous levels. They have discovered a severe Vitamin D deficiency which will need to not only be replaced, but also investigated further to find the reason for the problem. Immuno will undoubtedly check for more immune deficiency problems further than the one I’ve already been diagnosed with. This will surely be helpful.

I hope to get back in to Dr. Hurt (the best internist I’ve ever seen) this week. Need to get the results to my thyroid ultrasound. Also need to address the back pain. If the nerve block didn’t work and the EMG was normal, we need to look for other reasons for the severe pain.

I am still in pain from yesterday’s needle fest here at Mayo. I hope tomorrow brings more hope than today.

 

12 Comments on “Mayo Clinic Day 4: Waiting

  1. I just want to say that I am so proud of you. I know I’m not there, but I know that your disposition and outlook and determination to find hope in each day is admirable and noteworthy. You have incredible strength. Let me know if there’s anything I can do. Do you know yet how long you will be staying??

  2. Carla and I were just saying today what a godsend it is that you’re able to be there. Fix your eyes on your Creator and perfecter of your faith – He will sustain you through pain and uncertainty. And we are all praying and of course here to help in any way we can! Thanks for doing such an awesome job in keeping us all posted.

  3. Hi Sarabeth,
    Mayo Clinic has served my husband and I well. I have a rare Genetic Endocrine diagnosis called Multiple Endocrine Neoplasia Support (MEN) http://www.amensupport.org. I empathise with your situation, as I have had to stay at Mayo Cliic for sometimes two weeks.

    The checker system is sometimes very useful. Perhaps you could find out if it would be better to become a checker in the mornings, finde out what time they open, then find out what time they take checkers in the afternoon. Befriend the reception workers, they will try to do everything they can.

    When I have had long stays at Mayo I haven taken some of the tours also The Mall of the Americas is in Minn, take in a movie. See if there are any local activities. I have attended many different events.

    If you have a car ask your Hotel for information, some ties they will give you discounts to local activities. Victoria’s Italian Resturant is Very Good, so is Michaels Resturant (a little on the pricey side). Do not miss the Dutch Baby’s this is across from Mayo and are Panacoukins, Walk the tunnels very interesting shopping.

    I know some of this sounds trivial but it sounds like you need a few days off and then resume testing. I am a nurse also (tend to think of our diagnosis. Believe me Mayo Clinic is a supperb instituitional

    Our 2 nonprofits and we do Patient Advocatey

    Never stop asking question and communicating with the physicians, if you want to see someone else ask your Primary Physicians and they will get you switched to another Physician

  4. Just caught up with your posts. I pary that there is progress.

    Kathy had her thyroid whack out (Probably not a medical term) when she got pregnant with Chris. Definitely better to know early rather than too late.

    Keep posting.

    Charlie

  5. Well Sarah I am reading some progress @ you are hanging in there very well. Soon you will home @ put all this to rest. I am very much interested in reading more of your blogs. You are one strong woman @ doing good you made it this far so now it will only get better. I am wishing you well keep your chin up @ have confidence within yourself which I know you already have. I am praying for you @ your return home soon @ safely.
    Keep us informed. xo

    Diana

  6. Really glad you were able to find out some answers that might help you down this road! I’ve been following your blog the past couple of weeks and have been thinking of you often! I really hope you are able to find relief soon! Hang in there girlie!

  7. Sarah I see a wonderful endocrinologist Dr. Gunawardena at Leigh. He really helped me when Synthroid just wasn’t enough. Once you get some answers and if you need an endocrinologist, I would highly recommend him. Wishing you great luck!
    Brenda

  8. Just found your website blog and am reading it. I have had Radiculopathy for years, but very little done to help beside lots of Physical Therapy and an Epidural, to which I had a bad reaction. Subsequent Drs prescribed an implanted Stimulator.
    Yet, EVERYTHING I have read on Radiculopathy, most notably from Mayo Clinic, says (when matching my symptoms) that I should have had ’emergency surgery’ for it. Yet NO ONE wants to do it. First Dr I saw, for 18 months, had surgery scheduled, then cancelled it the week before and discharged me.
    SHOCKED! I should say so. No one has helped me since.

    I really hope you got better treatment than I have. Will continue reading your blog……

    E.M.S.
    4/3/2014

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