Musings of a Marfan Mom

MRI

| 7 Comments

Headed in for an MRI of my spine this afternoon. The pain specialist I saw a few weeks ago ordered it to see if the fibromyalgia is really just nerve damage due to spine changes from Marfan. Don’t get me started on the grief it took to get this scheduled, but for once it wasn’t the insurance company’s fault! Go figure!

Anyway, I just got off the phone with the scheduler and she said it will be sometime in JANUARY before I can get my next appointment, to even DISCUSS medication or physical therapy/acupuncture (which I’d prefer). My initial appointment was 4 weeks ago.

So…the pain clinic only lets you see them for 6 months, but the first HALF of that is spent waiting, which means I get maybe two visits after starting treatment to see the specialist. Seriously?!

I think I’m going to go cry in a hot shower now, then try to think up a Plan B.

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7 Comments

  1. I’m sorry about the appointment, that’s no fun! I’m really glad to have come across your blog though, one of my good friends had Marfan. I hope a Plan B comes quick and that things work out! Happy SITS Saturday Sharefest!

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  2. I have a sister-in-law with fibromyalgia. I know it is not fun. I’m sorry you’re having pain and having difficulty getting help. Hope there’s improvement for you soon.

    Just stopped by to say hi from SITS; hope you’ll do the same.

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  3. Oh, my goodness! I am so very sorry you are going through all of this. I feel so badly for you! When I’m feeling a bit better, I really want to take some time to read through your blog so I will know more about you and your situation.

    I’ve had some REALLY bad experiences with so-called pain ‘specialists’. As you may already know, you must be extremely careful to find a physician who has truly studied to become a specialist in the field of the pain management (preferably an anesthesiologist who specializes in pain management) AND who truly cares about people in pain. You need to be able to weed out the ones who see 50 patients a day with their only desire being to make a ton of money. (Those people ARE out there and it is sad!)

    From what you’ve said in this post, I’m quite leery of the doctor and clinic you’ve written about. Of course, I could be completely wrong and I hope I am! I can’t wait to hear what happens. I truly hope and pray you find the answers you are looking for and the pain control you need.

    I will be back soon to read more about your condition. In the meantime, I hope you will visit my blog. I’d love to have you! Regardless, I will most definitely keep you in my prayers. Take care of you!

    HAPPY SATURDAY SHAREFEST!

    Teresa <

    IN SICKNESS and IN HEALTH: Communicating with your spouse about your pain

    http://toomanyheartbeats.blogspot.com/2009/11/in-sickness-and-in-health.html

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  4. This is awful. One of my good friends found out last year she had it. I know it can make things very difficult. Thank you for your candidness.

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  5. Good luck with finding a Plan B! Just found you on SITS and thought I would drop by!

    My personal blog:
    http://www.finewire.blogspot.com

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  6. Hope everything turns out OK for you. My youngest is going to a shoulder surgeon tomorrow and probably will be laid up over Christmas. Sending positive vibes your way…

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  7. What a pain! I’m sorry you have to go through all that. I think it’s wonderful that you’ve decided to share your journey with everyone. I’ve really enjoyed your blog and will continue to do so. Have a great evening. :)

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