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A Visit to NYC - but not for Fun

Thursday, December 08, 2011

My last few days have been pretty full--on Tuesday I went to NYC to a trip to a new rheumatologist for a second opinion about whether or not I really have Ankylosing Spondylitis as I was recently told I do ...The trip went smoothly...I was being driven by a native of the City so had little to worry about in that regard; except that, as always, traffic backups could mean hours of delay, so we left plenty of time. And the trip went so smoothly that we were there 2 hours early! We had to spend that time sitting in the waiting room waiting, hoping to be taken early. The doc was backed up though, so instead of getting in before my appt.time it was more like 30 minutes AFTER...Let me tell you, my body was NOT happy with having sat for two and a half hours in the car and then those hours in the office! And then my appt ended up taking well over another hour; then the 4 hours back (yeah, we hit rush hour emoticon ). We stopped to eat so it broke up the time in the car anyway. My head felt like it was going to sink through my spine and end up somewhere in my chest! The pressure on my spine from being vertical for that long (11 hours total) was causing unbelievable pain.

The rheumy had to have been the nicest person I'd ever met! This man has been the top doctor on NY Magazine's list of top docs in NYC for three years running and he helped me get undressed and dressed...even put my socks on! Can you imagine?? (to get dressed at home I rely on devices like reachers and sock-put-ter-onners emoticon ) He spent a long time with me...looked over the reports and films I'd brought and gave me his verdict: I don't have AS; I have psoriatic spondrylopathy which is causing my spine to fuse...pretty much the same difference but follows a bit different pattern. And because it has been focused so much in my neck, (whereas AS begins at the bottom and works it's way up); it may be more dangerous more quickly...

He told me to seriously think about whether or not to bite the bullet -- and risk major infection and death, due to my propensity to get very severe infections already--and to go on Enbrel. (A biologic drug to treat RA and PA which works by destroying the immune system. Obviously this carries major risk) He said, really quietly, that if I don't get help soon, I will soon have a very, very poor quality of life. emoticon Scary thought. It can get a lot worse than it is now??? (I really do know that it can, but honestly the thought frightens me to death.)

The doctor took a bunch of blood tests and I am to call him, probably at the end of today (Thursday) for the results. He DID already call me last night to alert me that my sodium is now 117 (low-normal begins at about 134-136). This is potentially a very serious problem which I need to address today with my local doctors.

The rheumy told me that he knows the trip is hard on me and that I don't have to go to see him again unless I want or need to...He said he will talk with me on the phone anytime I want - for me to call him and to keep in touch with him. What a LOVELY, lovely man! Just the fact that he accepts my insurance shows you that he isn't in this for the money--and that was confirmed by his willingness to remain accessible to me long distance.

So I am thinking about the choice in front of me. It's not an easy one; nor one with an obvious answer.
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Member Comments About This Blog Post
    I don't usually give advice and I am not going to start now. I am going to pray for guidance, wisdom, and discernment for you from God and that you spend time in prayer and meditation with Him before you make your decision. I believe that if you do that, you will make the decision that is right for you! When I transferred from one rheummy to another over (10 years ago) that was an assistant professor @ Washington University of Medicine and a physician @ Barnes/Jewish Hospital, she didn't believe I had any kind of arthritis @ all and took me off all meds. Within 3 months, my feet turned inward so badly I couldn't wear any shoes and I had to have surgery on both feet and have metal in both feet/toes! I have also taken all kinds of biologics, etc., the last one Simponi to slow the progression of the disease (which is either PA or RA - not sure which) and which is now in a semi "recessive" state. I have been off Simponi over a year now! and had no ill effects from it or the other biologics I was on. Or if I did, I discontinued them and tried another one. There are so mamy now to try. Good luck, my dear and God Bless!
    3203 days ago

    Comment edited on: 12/13/2011 1:55:18 AM
  • no profile photo CD10895053
    Oh Cynthia, I'm thinking of you so much too. With this awesome doctor's opinion, you'll be so well taken care of. So happy that you chose to get a 2nd opinion! Good for you. More power to you too! emoticon
    3204 days ago
  • no profile photo CD7262646
    My thoughts and prayers are with you. emoticon
    3205 days ago
    Rough, long day for you. I am relieved the doctor is not only top in the medical field, recognized as such, he's a compassionate man too.

    I pray the right decision be obvious to you.
    3206 days ago
  • _LINDA
    So glad you found this gem of a Dr. The biologics really are life savers...I have never gotten sick while on them, but I like to think its because of my healthy eating, getting tons of fruits and veggies to naturally ward off sickness. If I were to catch something, they simply tell me to stop the biologic until I get over it..I have had some surgeries where they didn't mind if I took it and others where they told me to stop them. Doesn't sound like everyone is in agreement with their effects..I am just lucky I am not prone to infection and had nothing happen with my 28 some surgeries..
    Pray for guidance..Feel what is in your heart for your decision. Personally, I would go for better quality of life.
    Wishing things were not so bleak for you my friend :((
    emoticon emoticon emoticon
    3207 days ago
  • no profile photo CD5645667
    I am sending my Love and Prayers my friend!!.
    I am so sure you will make the decision that is right for you.
    Lovely that you had such a caring doctor .... they are few and far between .
    Love and Hugs Susie
    emoticon emoticon
    3207 days ago

    Comment edited on: 12/8/2011 7:54:31 PM
    I think your a winner! I like the song live like you are dying (a country and western song) . The man says we all should live like we are dying(we are from birth) and enjoy life as best we can. I have had friends with major issues on Spark and outside it that have ate better and exercised to help make the quility of life they have better. I also have known folks to battle cancer for many many years . You can do this ! I pray that today is a GREAT day for you and your feeling better. emoticon emoticon
    3207 days ago
    I am so sorry you have to deal with this. I just did my blog about how important a good doctor is to your health, not just when you are sick. I agree with the previous poster, known is better than unknown. If you can get all the info and have a doctor you trust, you may be well ahead of the game. It sounds like this doctor is advising you to take the enbrel? I am envisioning faster deterioration if you dont, and then being unable to move at all, or being bedridden? Is that what he was getting at? I guess your decision is about quality of life then. I do know people on enbrel who have had great success, one has been on it a year, and the other just since this summer. I know they seem to feel better, they say they do. One is family member and they do appear to move easier and be in less discomfort.so far, no infections but they were not prone to it before. the other is a friend and I dont know the medical details.

    I'm hoping that whatever you decide, you do so with all the knowledge you can get, and that you can manage and beat this!
    3207 days ago
    Just wanted you to know my prayers are with you.
    3207 days ago
    Just a clarification...My main disease is PA. (Psoriatic Arthritis)..the "PS" is sort of a sub-diagnosis or a manifestation of the PA in a particular area...in this case: the spine.
    3207 days ago
    What a wonderful doctor! He obviously went into the profession because it was a 'calling,' not because it was a career and a high standard of living.

    Re the PS (PA?): the known is better than the unknown, to my mind, or better than the unsure, in this case. Now that you know, you can learn everything you can about the condition and make the best possible choices for you and your life.

    I'm sure you're already planning to do this, but I would definitely get a treatment strategy mapped out, and use his guidance as much as possible. And keep us posted, Cynthia - you never know when the knowledge you acquire and the experiences you have can help someone else somewhere along the line.

    You're in my thoughts and prayers, hon, as always...
    3207 days ago
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