Facing new challenges ahead

Yesterday Lizze received her cane. It’s difficult for Lizze to be physically reduced to needing assistance to walk. I won’t speak for her as she will be sharing her own feeling soon enough. For me though, it’s heartbreaking to watch her struggle with so much pain.

I will be taking Lizze to the Cleveland Clinic to a  rheumatologist for a second opinion. Not really a second opinion more like a re-evaluation. The doctor that have diagnosed her with Fibromyalgia is a top 50 doctor in that field in the US so we’re pretty confident with his diagnosis. The concern right now is that she is unresponsive to medications. It could VERY easily be the stress we are experiencing each day or she has the wrong diagnosis. We will be seeking help at the Cleveland Clinic to once again rule out MS. I say once again because it was ruled out 6 years ago when she was diagnosed with Fibromyalgia instead.

The concern is that it may have been to early to detect MS 6 years ago. Since then things may have progressed to a point that it’s now detectable.The symptoms of both are very similar and she’s losing more and more mobility each day. The odds of someone at her age having all of these things going on is extremely unlikely, according to some of the doctors. It’s so uncommon that it’s becoming more and more likely that something was missed. That something could very likely be MS, as it fits quite well into her plethora of symptoms.

The other thing we are looking into at the same time is that Lizze is VERY likely an adult with Aspergers. It makes a great deal of sence.  Big picture, it really doesn’t really matter that much. In reality she wants to know and I agree. It would give her a better understanding of herself and help me to better communicate as that is typically a struggle for us. Lizze is adopted and so we have no reliable medical history. It’s important to her because it will also help to explain having 3 kids on the spectrum as there is a genetic link. This is however, a much lower priority then the rest of her medical issues but it’s still important none-the-less.

Lizze is on day 20 (I believe) of her migraine. As I said before she will be having a procedure called headache infusion done. This will hopefully finally break the migraine. Today, however, we were told she can’t have the procedure done until May 25th. That means she has almost another month to try and deal with this crippling migraine. Nothing so far has helped and she is long past the end of her rope.

I’m auctioning off my phone so that I can get the van fixed. I can’t get Lizze or Emmett to Cleveland without it. Hopefully we can get some new information from the Cleveland Clinic that sheds light on to her situation. Hopefully…..hopefully….it’s the stress that is making everything untreatable and not something more sinister.

Please pray that she finds some relief from her pain ASAP.

Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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Bonnie Stewart

I’ll be praying for Lizzie and that you can get your van fixed. Love you guys and your honesty.