Some of those Where’s Waldo pictures are easy while others you send up staring at for hours because you can’t find Waldo. Finding him is like looking for a needle in a haystack. Getting a medical diagnosis is just as hard sometimes. In fact, it would be easier to find Waldo or that needle. I have come to find out that things are rarely textbook. If everything looked like it did in medical textbooks doctors would have an easy job.

Since the beginning of March my 15 year old has started having some pretty odd problems. She woke up one morning, got out of bed, walked into the hallway and fell. She had what we thought was a seizure…and that was the start of everything. Since then…

  • 5 emergency room visits
  • 29 vials of blood
  • 1 urinalysis
  • a minimum of 12 doctors appointments with 3 different doctors
  • 1 EEG
  • 1 EMG
  • 1 CT
  • 1 48 hour ambulatory EEG

Now tomorrow she has to have a lumbar puncture done. Through all of this we have discovered she has Sjogren’s Syndrome and Hashimoto’s Thyroiditis (auto-immune hypothyroidism).  Oddly, even though she was checked for specific anti-thyroid antibodies no one did a thyroid panel on her. That was discovered by the endocrinologist that has been brought in on her medical care. He requested that blood work yesterday. He has yet to determine if he’s going to take her on as a patient, adding one more patient to his already horribly busy practice. He’s only one of two pediatric endocrinologists in the DC Metro area. So, we are waiting for that blood work and the blood work that the neurologist requested to come back.

Meanwhile, our neurologist has given our daughter a diagnosis of MS. She only has part of the MRI report, she should have rest of the report on her spine today. We had to reschedule the brain portion because she now wants it done with contrast.

It’s only taken 2 months to get this far. I am relieved that this thing that causes my daughter to have involuntary muscle-spasms, psudo-seizures (if that is in deed what they are – no one has named them, we have just been told it’s not “real” seizure activity) where she hallucinates, looses her ability to talk, looses blocks of time and ends up in a wheelchair has a name.

I had someone tell me that I better hope that my daughter didn’t have MS. I understand her thought train. No one wants MS and I know it’s not an easy disease to live with. I know people – adults – with MS and their doctors have their disease pretty much under control. My husband knows someone with MS and he’s stuck in a wheelchair partly because of the progression and party because of the poor management of it by his doctors. I am well aware of what this kind of diagnosis means.

If it’s not MS, we are back to trying to figure out what is wrong with her.  It means whatever is wrong doesn’t have a name and a 15 year old girl just has to adapt to something that doctors can’t name and therefore can’t treat. How does one reconcile with that?  Having an answer, regardless of how bad it sounds,  is better than having no answer.

I feel the same way about this as I feel about the start of the autism journey. Abnormal has been given a name. A name means that people – especially doctors –  know what it is and know something about it. It mean that help can be gotten. It’s better than trying to play a medical Where’s Waldo.

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