It’s been three months since this medical saga started and still no diagnosis.  The hospital stay came to 30k (gotta love American healthcare costs–$860 for a vitamin B12 blood test, I kid you not!).  Thankful, we have excellent insurance so I’m not too worried.

I’ve had three MRI’s which are $6500 each.  Add in all, with the specialists, lab/radiology and doctors appointments (15 visits and counting), I think we’re hitting 75k worth of medical charges and still no diagnosis.

I saw the Director of all MS for one of LA’s most prestigious hospitals and she said for sure, this isn’t MS.  She thinks I have some underlying inflammatory disorder.  No shit Sherlock.

My day starts with applying Lotamax in each eye, which means I can’t put my contacts in for 30 minutes as the medication works.  I then stumble into the kitchen blind for a probiotic that I take first thing. Then I take 4 horse sized omega pills to help with my chronic dry eyes.   Then comes the vegan multiple vitamin and B complex pills.  Followed by turmeric and 6 Evening Primrose pills.  My eyes are so dry, I have to hydrate them with special drops now before I can put my contacts in.  And often,  I have to repeat the entire process- removing the contacts to rehydrate my eyes for a second time, then reinsert my contacts.

All of that…and I haven’t even gotten ready yet!  The clock seems to be ticking and time keeps flying by and I’m stuck fighting this mystery illness and handling my symptoms.  In a nutshell, it’s been pretty hard.

I’ve had to face the prospect of maybe having a tumor in my brain (thankfully the doctor was wrong and the brain MRI came back clear).  I spent weeks thinking this may be MS, which obviously wasn’t an easy thing to contemplate.  I’m a deep researcher and I was already half-way to signing up for HSCT and heading to Mexico for treatment.

As of right now, I know my immune system has been fighting something. Two labs came back abnormal: cryoglobulins and my C3 was low.  And I’m starting to think all my crazy symptoms may be caused by a virus.

I lost a lot of weight during this.  And every time I run into someone now, they always say, “Wow you look amazing.  What are you doing?” It’s very strange to look in the mirror and seeing the perfect body, yet knowing you didn’t do anything to deserve it.  And it’s strange seeing a body that looks healthy, yet isn’t.  They usually follow it up with, “Did you spend the entire summer working out?”  And that’s when I finally say, “Actually no, I spent the entire summer battling a mysterious illness.”

Usually they shrug up their faces.  People don’t really know how to react.  And I’ve figured out that most people don’t want to hear anything negative.  But not everyone.  I’ve gotten a huge amount of support, love and prayers from people I would never expect.  And that’s been surprising to say the least.

Maybe this is a common experience but keep that in the back of your mind, should you ever fall ill. You’ll notice who your friends are…and aren’t.

This is going to totally show my age, but the children’s TV program Mr. Rogers use to say on his preschool program, “Look for the helpers” when there is a tragedy.  And during this, I see many helpers popping up in my life, checking in on me- offering to come along to appointments etc.  I feel like each and every one of them has been used like an angel in my journey to a diagnosis.

And then there is my husband.  He has been my rock.  He has been my everything through this.  And he has stepped up more than I’ve ever seen.  The affairs don’t matter.  They are long gone, forgiven- and in the rear view mirror of our marriage.  God has given me a new set of eyes for my husband.

And that’s the hidden blessing in all of this.


7 thoughts on “Diagnosis

  1. I had a period about 14 years ago with a mysterious illness. I was ill with horrible chronic pain for about a year and a half. Worst experience of my life. They never did find out what was wrong with me. They have educated guesses on what it was, but it ultimately resolved on its own and has not recurred. I don’t wish that on anyone. Hugs and prayers that you find out what’s going on and help the right treatment.

    Liked by 1 person

    1. All my friends know I am battling this mystery illness and its surprising just how many people have contacted me to tell me their medical problems. It floors me at times because I have found out things I would have never known, had I not been open and honest about what I am fighting.

      That’s been another silver lining in all of this. My friendships are deeper with a lot of women as they have literally told me crazy stories such as yours. One of them I see daily since our kids go to pre-k and she has several of my symptoms but she had a mini-stroke which she hasn’t told anyone about. You would never know just how much she is battling her own health.

      Another friend told me that both of her parents died because they had been misdiagnosed with other diseases. And they didn’t get the right treatment and died! Stories like these keep me pushing for answers.


  2. My heart goes out to you. I am intense researcher myself and would be doing exactly what you are doing, every single step of it trying to find answers, any answers, become my own doctor, staying several steps ahead of any medical advice, information, suggestion. I truly hope you find out what is going on and can reverse it forever.

    It’s often no accident the way seemingly bad things actually have a silver lining. Your improved relationship with your husband is a blessing through all of this “unknown”. I’m so happy for you that that is gaining strength and getting back on track.

    Liked by 1 person

    1. I couldn’t have said it better. We must be twins. I am a deep researcher and I won’t accept a diagnosis until this makes sense. It must line up with everything and not just diagnosis part of my symptoms. But despite what I am fighting, I am finally able to care for my kids (not 100% but way more vs after my attacks).

      I prayed a lot about that. Telling God, “I need to be able to at bear minimum, take the kids to school and back by the end of August.” And my vision came back and I started driving again right before they started. So that prayer was answered.

      But still no diagnosis…and I had a flare up of symptoms on Friday and Sunday. I know my body is fighting something. I just don’t know what it is.


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