I'm not entirely sure how to start this blog. I have been feeling a need to express myself and have a place where I can explore and share information about chronic fatigue syndrome.
Lately, Sebastian and I have been struggling with these new, unexplained symptoms. He's had numbness and tingling in his entire left side. It tends to move throughout his left side in terms of intensity, most often concentrated in his left hand and left foot. Being a little bit paranoid about any kind of neurological symptoms (mainly because of the experience with my dad where his symptoms started with nausea and vomiting and the clinic thought he just had a stomach bug and sent him home - three days later it turned out he was having a massive hemorrhage in his cerebellum, and it took a six hour surgery to release the pressure and drain the blood and fluid), when Sebastian first told me about his symptoms, I naturally went online and began searching frantically for some kind of information. Scary possibilities came up -- brain tumour, MS, degenerative neurological conditions... He saw his doctor, who did a referral to a neurologist, but naturally, it's a long wait to see a specialist. We're on the cancellation list, and the appointment has already been bumped up from April 19th to March 29th. In the meantime as we've been waiting, some new symptoms have arisen - severe brain fog, nausea, dizziness, weakness... All of it unexplained. I've tried everything I can think of - his blood pressure has been normal (well slightly high, but normalish). Eating doesn't help the symptoms of weakness and dizziness, so it isn't blood sugar related. He's had lab work that's all come back normal. I've consulted with the medical director at work, and basically the best thing we can do is wait to see the neurologist because with his specialist assessment, he should be able to determine what's going on.
It is so frustrating to wait with such uncertainty. Sebastian keeps talking about how he thinks he has a brain tumour and that he thinks he is going to die. I never know what to say in moments like that...
I am trying so hard to be patient and keep as positive as possible.
