Hi, limbo and new people.
I am most definitely in limbo. I don't know how some of you do it.
I originally went in due to -extreme- fatigue, that would come and go drastically. I could not figure out a reason why I would suddenly get so weak and tired for chunks of time (20 minutes? 2 hours?), and then feel much better. And, I would have sharp, quick pains in random places that flash for a second, and pins and needles that would hurt so much I would want to cry. I kept trying to shrug it off, until finally, the exhaustion felt like I had the flu for an entire day, but I had no other fever/cough, so I broke down and went in.
It's been a couple of months of testing and appointments now.
All the while, other things that I kept shrugging off got worse. My husband would ask me if I even felt how bad my twitching was... I didn't. Now, sometimes my hands twitch and shake so bad I can't write or type, or my feet jerk so bad, I can't sleep. Sometimes food gets caught in my throat. I'm not "choking", because I can breathe, but something is caught, and I can't eat/drink until I cough it out of the way.
My doctor ran many basic tests, hoping to it would be something simple. Tests that were fine: thyroid, sid-rate, CRP, anemia... so she started doing more.
I think it all got more serious to me when she did my reflex testing. Most of my reflexes, especially on my left side, are diminished or almost completely gone. And the Babinski's was positive (is that how you say it), on my left.
She told me to go down to radiology and get and MRI done as soon as I left her office. I tried to do what she said, but when I got to radiology, they were angry. Apparently my doctor is newer to the hospital, and did not know the "protocol". I was told to call in Monday (it was Tuesday), and make an appointment then. When I called Monday, they informed me that the appointments were booked through the NEXT month (nor even the current month), and if I called in a few weeks, I may be able to get an MRI the month after that. At this point, I will apparently be considered lucky if I get my MRI 6 weeks from the date of my last appointment. My doctor is LIVID, but hasn't been able to find a solution yet (military insurance). At least she is trying.
I guess that will give plenty of time for the Lyme and Acetylcholine Ab tests to get processed.
I just... have no idea how to take the next 6 weeks.
I am most definitely in limbo. I don't know how some of you do it.
I originally went in due to -extreme- fatigue, that would come and go drastically. I could not figure out a reason why I would suddenly get so weak and tired for chunks of time (20 minutes? 2 hours?), and then feel much better. And, I would have sharp, quick pains in random places that flash for a second, and pins and needles that would hurt so much I would want to cry. I kept trying to shrug it off, until finally, the exhaustion felt like I had the flu for an entire day, but I had no other fever/cough, so I broke down and went in.
It's been a couple of months of testing and appointments now.
All the while, other things that I kept shrugging off got worse. My husband would ask me if I even felt how bad my twitching was... I didn't. Now, sometimes my hands twitch and shake so bad I can't write or type, or my feet jerk so bad, I can't sleep. Sometimes food gets caught in my throat. I'm not "choking", because I can breathe, but something is caught, and I can't eat/drink until I cough it out of the way.
My doctor ran many basic tests, hoping to it would be something simple. Tests that were fine: thyroid, sid-rate, CRP, anemia... so she started doing more.
I think it all got more serious to me when she did my reflex testing. Most of my reflexes, especially on my left side, are diminished or almost completely gone. And the Babinski's was positive (is that how you say it), on my left.
She told me to go down to radiology and get and MRI done as soon as I left her office. I tried to do what she said, but when I got to radiology, they were angry. Apparently my doctor is newer to the hospital, and did not know the "protocol". I was told to call in Monday (it was Tuesday), and make an appointment then. When I called Monday, they informed me that the appointments were booked through the NEXT month (nor even the current month), and if I called in a few weeks, I may be able to get an MRI the month after that. At this point, I will apparently be considered lucky if I get my MRI 6 weeks from the date of my last appointment. My doctor is LIVID, but hasn't been able to find a solution yet (military insurance). At least she is trying.
I guess that will give plenty of time for the Lyme and Acetylcholine Ab tests to get processed.
I just... have no idea how to take the next 6 weeks.
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