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No diagnosis yet but this has taken over my life
Posted: Wednesday, December 11, 2019 10:24 AM
Joined: 11/27/2019
Posts: 67

Progressive weakness, everything is more heavy. Spasm of my thoracic cage that make it hard to breath and cause my heart to pump. Waking up with a huge electric sound around me and feeling electrocuted in my arms and head for over 30 minutes, my vision becoming blurry. I can't sustain more than 2 hours of activity a day. I left my job I couldn't do otherwise, as easy as it was. My memory of certain things is completely impaired, in some other areas my memory remains. For the GP if you look normal, can speak, walk straight and grasp their fingeres with minimal force you're fine. 

I've even had comments these days of how I look well, despite the uncontrollable weight loss. It amazes me that I look like I'm doing well during these times. Certain days neuropathic pain tortures me from my skull to my spine. 

I have told the people around me this may be palliative. Wether they want to consider it or not. I think some are starting to consider it. Something is wrong for sure they can tell, although it's not written on my face.

I love to read reports of scientific reasearch. Just because I'm curious and desperate for a cure. But I no longer want to speculate about a diagnosis, because it makes me dreaded and anxious. 

The tragic feeling I once had now is gone. Maybe it doesn't matter anymore after progression of the neuronal death. I was in panic thinking 'What are these people going to do when I'm gone' 'This is tragic, what about my projects' I'm now a bit more at peace. Slightly hopeful but at peace. 

I will soon, hopefully, have exams that will answer the questions that need to be. Meanwhile I'm hoping not to have any distressing physical symptoms that would cause a pointless visit to the emergency room. 

Posted: Monday, March 9, 2020 2:27 PM
Joined: 6/12/2016
Posts: 2402

Hello. I hope you are now getting answers to your questions. Questions pop into my head and heart at the craziest times and then I can't shake them. I hope you are feeling well. I just wanted to say hello and I care.