Sunday, October 10, 2010

Molli's Mayo Musings

I've done it.

We spent last week at the Jacksonville, Florida Mayo Clinic.

I've been:
and observed
by Mayo Clinic doctors and staff.

In 4 days, they were able to answer questions that we have been asking for almost 5 years. I arrived at the Clinic last Monday, thinking that this was my last hope. I left with a diagnosis and treatment plan.

Absolutely amazing, don't you think?

After several hours of being examined by doctors, 14 vials of blood for bloodwork, an EEG (4th in 5 years), observation for sleep apnea (which I don't have), MRI imagining (I have emprical evidence that I have a brain, despite what my older brothers may think), the most extensive eye exam I've ever had...all with the same results as I've had since early 2006...Dr. Shuster is convinced that I have a non-specific auto immune condition.

It doesn't have a fancy-schmancy name. Not even sure it is what you'd call a disease. But to quote my son, my body is at war against itself...invading Normandy completely unaware that the war was won 60 years ago. My immune system has gone haywire and since it can't find a disease to kill off, its eating away at perfectly healthy nerves in my brain.

Not good! I'm not certain there is any brain matter to spare, you know?

But, thank goodness, we even think we have a handle on what caused World War III to begin inside my body. It is linked to a situation that is almost unbelievable and if you told me the same story, I'd be skeptical. But honest, it really did. I'm not going to tell you the entire story here, but I will say that the title is "Rabies is always fatal" and it happened to us when we woke up in our bedroom one night over 5 years ago to find a bat flying around in our bedroom.

Because we were alseep with the bat in our room, we found out we were at risk to have been bitten, even though we felt certain we were not. After consulting several sources, including the CDC and our doctor, we went to the ER and were given rabies shots. We had a total of 3 shots before we knew for certain that the bat didn't have rabies.

6 months later, I began to have the symptoms that have plagued me ever since. The rabies vaccines are of the live variety and the doctor believes that my auto-immune system went nuts because of that. Once it was in motion, it just couldn't quit.

I've been tested for ALS, Stroke, Alzheimers, Parkinsons, Epilepsy, Lyme's Disease, Multiple Scloresis, and several other not so well-known illnesses. Never could get a diagnosis. I've been told I'm interesting, off and not quite right. I've even been told that I probably have a 'deep seated wound in my pshyche from childhood that needed to be addressed.'

I am so thrilled to have a non-specific auto immune disorder and means to treat it. Really. I'm not going to give anyone a bad time about hooking me up to an IV and administering 1000 mg of steroids a day for 5 days. Because I believe that this is going to ultimately make me better and our lives will not be ruled by my stroke-type symptoms any longer.

So...thank you for your prayers and concern for us over the past week. It meant the world to me and to the Rocket Man.

There are several funny stories to tell about the week, and I promise I will tell them over time. But tonight, I just wanted to say that my grandsons are downstairs watching TV, Rocket Man is asleep in the bed beside me and all is well in MolliWorld.

Thank you, from the bottom of my heart, my friends.



Jane said...

Wow! The bat ... I remember that. Who'd have thought?? So glad to know you have a treatment plan, even if an "unspecified disease". I felt pretty sure all along that you had a brain :-). Good luck and I look forward to hearing how you're feeling after treatments! Praying for complete healing (and riddance of any bat juice effects)!

Annie said...

God Bless Molli!
And it certianly brings a peace in my life to know that someone out there in MayoClinic-land believes you and believes that they can do something to make your life easier and more comfortable.
I love you to the moon and back!!

Sherill said...

I'm so glad you have a diagnosis and a plan! And who would have thought the bat saga would have this sort of result!

Mevely317 said...

I'm soooo glad to see this!!! Isn't the "not knowing" part the worst? Thank God for those men and women who listened ... and acted!
Sweet dreams!

Mollianne said...

I'm having fun with all my bat halloween decorations. I will certainly have to add to my collection now.

Carla said...

How interesting! Good thing you thought to tell them about the could have dismissed that as non-important information. Praying that this treatment plan works and you will be well soon!!