Changes

 

 

 

 

 

 

 

 

 

 

So I switched hospitals.  I think I shared that this was something  I had been considering for a long time.  It took speaking to my primary doctor, who agreed, before I pulled the trigger.  I spent a considerable time praying over finding the right doctor.  And asking God to please bring me a doctor who will actually listen to my entire medical saga thus far.

Well this week, my prayers were answered.

I made an appointment with a local rheumatologist, yet part of the new hospital.  I wasn’t expecting much and frankly, was only using this appointment to “get into the system” at this hospital.  The MS doctor had already referred me to two rheumatologist, which are the best of the best doctors at the hospital.  They initially said I couldn’t been seen till spring of 2017 (yes- this is the reality of just trying to get a diagnosis people).  After many emails back and forth, and lots of pressure from my side, the MS doctor was able to get me in this year.

But now, I don’t even know if I will need them.  That’s how great my appointment went this week.

Introducing Dr. K.

I had nothing prepared to say.  But I came armed with 4″ of paperwork and all my MRI’s to date.  When she walked into the room, I just said, “I’m really happy to finally meet you.  I have a complicated medical history story.  And there isn’t one doctor who has bothered to listen to it all.  Will you be the first one?”

“I’m all ears”, she said.

For the next hour, I took her through every single twist and turn.  From my attacks in 2013 through to this year.  She took extensive notes during the entire story, frowned at various time (like when I shared the doctors suspected I had a tumor and I was rushed in for a MRI).  And she got angry at parts of my story, “Why didn’t that doctor see you?  What was his reason?!?”  And when. I explained how I lived for over a month, thinking. I must have MS since I was referred to the MS doctor, she said, “There is a constant battle between rheumatology and MS.  Both departments are constantly referring patients back and forth.  It’s a long standing battle, I’m afraid and it puts patients like you, in limbo.”  I hadn’t realized the politics and dynamics between these two departments, so it was refreshing to hear such a personal insight.

When I explained that I had ordered my medical records and that they were littered with errors, and that I didn’t have time to clean them up and wait 60 days for doctors to respond to my complaints she said, “Don’t worry.  I’m not going to be biased here.  But just so you know, the MS doctor wrote a very nice note in here about you.”

I presented my case and explained what disease I thought I had.  But that I was open to other theories, however no one had diagnosed me to date.  When I explained we had maxed out our deductible, she replied, “Well we are going to reorder every single test that has ever been done on you.”

I watched as her fingers feverishly pecked away at the keyboard, multiple times.  Then said, “Everything I do, from here till the end of the year, will be free.  Come January, I’ll be on the hook for everything.”

I shared all the supplements I have been taking and Dr. K said, “Great- going the all natural route.  You’re taking everything I would recommend.”

“For now, no medications.  I don’t want to mask any of your symptoms.  Let’s get all these tests run.  Review in two weeks- then make a game plan.”

I seriously love Dr. K.

Twelve vials of blood later, I left with a big smile on my face.  I finally have a doctor listening to me and managing my case.  There is one special test that can only be run by the actual hospital, so I need to drive there.  Between the kids schedules, that pushes that test out to later next week.  And that’s the one test which always comes back abnormal.

All in all, it’s been a good week.  I even ran a 10k race.  Although my time was four minutes slower than last years, I’ll take it.  I’ve been through hell and back all summer, so just to finish was my goal.  I thought I would have to walk the race.  But I didn’t.  I ran the whole way.

The fighter in me kept going till the finish line.

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13 thoughts on “Changes

  1. Hello,
    I know this is irregular, but can you possibly email me the name of that doctor? I don’t care where in the country she is, I need a doctor to listen to me. I’m sick of being sick. I have never had a doctor who would look into my case deeply, when nothing fully supports all of my symptoms completely. It’s been 14 years going through the ‘vague diagnoses’ medical boxing ring, and I finally want to tap out. Idk if you can see my email on here when I post, but I can email you if you can’t. Thank you, and I’m so happy for you!

    Like

    1. This doctor is a rheumatologist. So I’m not sure what kind of doctor you need. But she is based in Los Angeles. Due to the complexity of getting diagnosed, I would strongly advise finding someone in your state as complex cases can’t be diagnosed in one visit, even if you were to fly out here. It takes time and possibly several visits and several follow ups, which I can’t see happening remotely.

      Have you considered contacting the Mayo Clinic?

      Like

      1. I have, I’m not ‘sick enough’ for Mayo. I know diagnosis takes a long time… I’ve been diagnosed with Fibromyalgia (which is why I believe no one will look further), POTS, dysautonomia (instead of fainting, I become irritable, apparently), chronic mono (epstein barr is at >4 when it’s supposed to be <0.8), chronic Lymes, a blood infection, chronic fatigue, and some other incorrect thing… each time I go to a 'specialist', I get a 'oh, I'm sorry, you probably don't have that, you have ____'… I've exhausted the specialists where I am. ANA is positive then negative, otherwise every other blood test is normal. No one has ever given me a MRI or CT, even though I clearly have neurological symptoms, nothing ever more than blood tests and tilt-table… I can fall asleep while driving easily, didn't get better when I was pregnant, I metabolize meds 5x a normal human, and the antibiotics and antivirals actually increased my epstein barr. So, believe me, I understand that it takes a long time to get a diagnosis, and what this all entails. It's been 14 years – happened suddenly, no trauma, no tick bite, no indication of anything before. Didn't even have the flu for 9 years prior to this. And it's only gotten worse over the years. I'm a Psychologist, so I know I'm not depressed, but I did that recommendation anyway to placate the doctors in the hopes they'd look further. I've done the no gluten, no dairy, no yeast, no tomatoes, no sugar, no flour, all raw diets and the arthritis diet. Nada. No change. No one listens, everyone sees one negative test result and says 'let's follow up in 6mos' — for what?! So, I don't frickin care if I have to move somewhere for 6mos, if there's a doctor who listens, I'd want to see them. Haven't found one yet… you're very lucky.

        Liked by 1 person

  2. I’ve been silently reading along on your health journey and I am very sorry you are experiencing this but it sounds like you now have an amazing doctor who will be a big help.
    I assume they are retesting your ANA? I read in one of your posts that it was 40 at one point but it’s entirely possible this could go up. Mine started at 38 when I had minimal symptoms and within a year was at 680 which is the highest number they test to here. Apparently I have also tested positive for every autoimmune disorder they have tests for but they won’t give me a specific diagnosis until I show further symptoms..I had minimal symptoms beyond stiffness, headaches, some lupus symptoms etc but I am on watch for everything. I know how frustrating it can be to just want answers..some kind of diagnosis so that you can move to working on management.
    Someone else commented on a previous post enquiring about a naturopath….I would highly recommend this too. They can be great for symptom management.
    And congrats on the running!! As a fitness buff myself I know how empowering it feels to be able to still achieve these physical tasks with a body that seems like it’s betraying you.

    Liked by 1 person

    1. Yeah I need to see a naturopath. It’s something that’s been on my mind for weeks but I’ve been spending so much time on my diet and supplement regime. That’s been consuming a lot of my time as I am tinkering with dosages, brands, quality of supplements etc. to help alleviate or reduce my symptoms.

      Yes my ANA was at 40. It will be interesting to see where it is now, after I see Dr. K at the follow-up. My C3 tested low as well, which means my immune system has been fighting something (and for a long time). I’m extremely curious to see where that # is now.

      I need to do another post but I had more tests run this week via another 2 doctors. Maybe one of these tests will lead us to some clues. For now, it’s a waiting game.

      Like

    1. Thank you. That last line just pierced my heart. It’s so true. I thought many times when I ran so many miles, working through the pain of my affair and not having CEO in my life anymore that all that pain was to prepare me for s greater battle. I wrestled with that a lot. But it’s true. All those miles of determination and grit taught me a lot. And quite literally prepared me for this race.

      You articulated that so well 🙂

      Liked by 1 person

  3. I so hope this new doc gets you on the path to recovery. After all the disappointment and bungling, it is plenty overdue. And that 10k? Just amazing!! congratulations on doing what even you didn’t think you could do, until you had to do it

    Liked by 1 person

  4. To comment on all your health related posts, this is simply heartbreaking. I know I have more posts to go and I hope this is the beginning of ‘knowing’. It’s so difficult to have no idea what’s the matter. Especially when you were so healthy and quickly became so sick. The contrast paints a good picture. First congratulations on staying so fit. That physical and inner strength you built up I’m sure has helped you more than you know.

    Next, I did not start reading your blog to understand how to handle complex medical conditions but I am fully cheering for you and completely hooked. From the way you speak of your affair and your husband’s affair you have much to teach all of us struggling with infidelity. Now you also have this illness which has helped you really focus on what matters to you in your life. I enjoy reading your perspective on everything.

    Also your husband seems to have turned things around just in time. I mean it couldn’t have been timed better for when you needed him. Fate really stepped in.

    I will keep reading till I’m current but I wanted you to know I’ve been continuing through your older posts. I really appreciate the knowledge you’ve shared even with the struggles you’ve endured. Thank you.

    Like

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