Medical Update:
Blood test (CBC - complete blood count) retaken 2 weeks ago and everything is normal. I have an iron deficiency which is now resolved.
Week of August 6th and August 14th - constant head pressure (like my head was in a vice grip), pressure in the ears, very loud and noisy tinnitus, and CONSTANT headaches. Most often the headaches occured around the eyes and sinus area. Sometimes the headaches were in the back of the brain/head like sharp jabbing pains. I recall sharp shooting pains on the left side originating from the area surrounding the brain stem. On at least 4 occassions the headaches were bothersome enough that I could not sleep or focus if awake during the day. On 4 occassions I recall needing to take IB profen.
Possibility (just guessing) - the last time I had one of these headaches was on August 16th. I went swimming on both the 15th and 16th. My mask may have been on too tight to create a seal and thus greatly increased the ocular pressure. In addition, I swallowed and inhaled the pool water frequently. When swimming laps it is hard to not ingest water when I turn my head to the right shoulder to breath. Maybe my mouth on that side is not creating a good seal but that is where I am most comfortable turning my head to breath.
VERY IMPORTANT - the odd weakness in my left arm, wrist, and hand has returned over the past couple days. Strangely enough my strength has increased in my left arm from repetively loading it with bags of groceries and using the right hand to grip the handrail. However, on occasion it is difficult to even hold a large class of water or a water bottle in that hand as it begins to shake. This never occurs on the right hand.
I remember noticing the return of the shaking left hand/wrist on Friday or Thursday when I was holding a cereal bowl full of watermelon (not incredibly heavy). I was eating while watching a movie. While using the utinsel in my right hand I tried holding the bowl with my left soon it became very difficult. My left hand started shaking making it hard to hold the bowl and finish eating.
I have noticed this left hand oddity while holding something with my left hand. However, yesterday after standing at our fund raising table for a couple hours my hand starting to bother me without even holding anything. It starting shaking mildly and felt weak.
I hope to heck I do not have the beginning start of Parkinson's Disease!!!! I have read about it and recognize mild shaking appendages as the early signs. SOMEONE WITH NF2 PLEASE TELL ME YOU SOMETIMES GET SHAKING IN YOUR ARMS/WRISTS/HANDS. After going through cancer and suffering complications of NF2, I DO NOT NEED to get some other serious ailment without a cure!
I can't remember what else now. Sometimes I get used to these things happening that I start to think it is just normal and I forget to write it down until a couple weeks has gone by. Then if the condition worsens or persists I am like "Hey. I don't think that is supposed to be happening!"
Oh, the only other thing I can think of off the top of my head is lethargy those 2 weeks, sometimes just nearly passing out and needing a nap after eating a meal (perhaps a sugar rush), degradation in balance when waking (falling off the toilet or staggering to the toilet when I awake and either falling over and nearly so), and Saturday my balance was really off. It is the first practice (aside from the day I fell on my tailbone) that I felt I struggled to walk with a normal gait.
For anyone reading, sorry if this bores you or bothers you. This is the best place for me to record changes in my medical status so that I can recall it. My handwriting is atrocious so a written journal of these accounts is a no go. I do go back and read the blog to track my progress.
1 comment:
Hi! I've got NF2, and also I'm completely deaf all because of this damn desease! I have to tell you though, my arms, wrists and so on NEVER shakes, as you said it.
Because of my former tumours, and surgeries that followed I'm completely out of balancenervs. Therefore, i would NEVER be abble to ride a bike, or swim. Well, I think you know what I'm talkng about, don't you?
About the headaching. The last time I had headache was over 15 years ago! Before that, I was suffering from a severe kind of headache! I don't really know the english word for it, but in Swedish it's called "migrän". Anyway, I felt LOW whenever I got it. (which happenned pretty often) Couldn't stand any kind of lights at all, had to stay in a completely dark room until it stopped.
Why don't you check my blog by the way?
Sorry if my english is a bit "rusty", but I try as far as I can to share my experiences of NF2
to all others in the world!
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