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moslofowl

New member
Joined
May 6, 2018
Messages
1
Reason
PALS
Diagnosis
04/2018
Country
US
State
MD
City
Abingdon
I have been lurking for a couple of months but noticed when one asks a question that background is requested so thought I would start with that. On March 16 of this year I went to work (warehouse) without a care in the world. I was a healthy, active hiker with a love of nature and a crazy dog. When I left my shift that day I found I couldn't turn my ignition key. I promptly blamed my car and made a note to call my mechanic.

Upon arriving home, I kept dropping my keys, unable to put them in the lock. I struggled to open a ziplock bag....the list goes on. I contacted Dr, Google who assured me I had Carpal Tunnel and the following week I went to my primary with my diagnosis. Luckily, she saw something more going on and sent me for an EMG of the hand. That Dr, with a concerned look, told me to get myself to a teaching hospital ASAP.

My primary called Johns Hopkins and was told the next appointment was a couple months out. I took matters into my own hands and went to the ED the following Friday (something I wouldn't recommend as insurances have just changed about non emergency ED visits) I waited for 8 hours and didn't get past routine blood work (tho i do see why a 60 year old lady complaining of weakness in her hand isn't high on the triage list) so I went home.

The following week I was better prepared. I left my dog with a sitter, brought 2 novels and a small cooler with snacks and water. This time I saw the neurologist on staff and was admitted by 3:00. The following morning one of the ALS neurologists and a few residents did a full work up. Thats when I got my preliminary diagnosis.

Since then I have had another EMG with nerve conduction study, 2 MRI's, 2 CAT Scans and lots of blood work...all looking for something to explain my symptoms. A few weeks ago I was put on Riluzole and I begin clinic next month. I am OWL and thats my story.
 
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I am sorry that you have to be here but welcome.

I am glad your primary was quick to recognize the issue. Where are you going to clinic? I hope you have support and resources but get in touch with the Brigance brigade too in case they can help you in some way.

If you have been browsing you probably already saw the sticky posts and know how to search but please ask us any questions
 
That’s quite the impressive story. I’m glad you didn’t have to wait long to get a diagnosis, but I’m sorry for the diagnosis.

I can relate to the part about being an active hiker with a crazy dog. I’m convinced this disease happens to great people.

Well, thanks for sharing your story, and welcome.

What’s OWL?
 
Welcome, OWL, while sorry you are here.

You will need your wry sense of humor yourself, but thanks for sharing it with us as well.

Best,
Laurie
 
Sorry to welcome you OWL! Being able to tell your story like you did will make you cope well with the cards you've been dealt. I like the cooler with snacks. Better come prepared!
 
Welcome to our virtual waiting room, the best thing here, there are no lines. Ask your questions or jump right in. You will get some honest and experienced answers.

Just watch out for the ladies in the bar, they may want your drinks and snacks.
 
Sounds like you pursued diagnosis hard- we did too. Better to know than not know hard as it is.

I’m sorry to welcome you to the club no one wants to belong to, but glad you found us and I hear a lot of spirit in your words.

The breadth and depth of knowledge here is a gift in a rare and poorly understood condition.
 
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