The "drop foot" situation has lessened. Thank goodness. Now I'm more lost cognitively speaking and there's more pain. It seems as though the more problems I have physically, the less problems I have mentally and vice-versa. I can move my body in almost all directions, but I can't remember my phone number. Is losing grasp on the concept of time a symptom???? Because I've had that for a while and it's getting worse. I think of minutes and hours in a different way than I should, or did years ago. Maybe it's an age thing. Maybe it's normal to do that. But, for some reason I can't get anywhere on time. Even when I plan ahead and set clocks for different times, I'm still late. It doesn't help that partial cause is the forgetfulness. "Oh, no... I forgot my phone." Or, "Where did I put that binder???"
And, the isolation.. I'll mention again... It's very lonely in this world of unknown probable neurological "difference."
I'm also very paranoid. Not of the boogy-man or getting murdered, but of what my partner is thinking... I'm always thinking that he's thinking horrible things about me. It doesn't help at all that he doesn't actually talk to me about what he's thinking. I know there are thoughts... There's a look people get when they have thoughts. He gets that look and when I ask what the thought was, he denies having one, but in a way that is suspicious. I'm not talking about important things either. Just insignificant thoughts that don't matter. The point is, he has a thought. I ask him what it was, and he doesn't tell me. I think I fear if he doesn't tell me about his stupid thoughts, is he going to tell me about his important thoughts??? I shouldn't be concerned about our relationship. It's solid and not going anywhere but forward, but I am so expecting one day for him to just out of the blue to say "It's over!"
I'm just being foolish..
Then at other times I have the excitement and innocence of a child with no care in the world.
I think these are all a part of whatever is causing my hands and the rest to go numb and stop moving. I legitimately don't believe this is all because I'm insane... <---- paranoia
Tuesday, November 8, 2011
Forget-ful-ness
I'm forgetting everything and have no concept of time which makes me late for everything.
Wednesday, November 2, 2011
Ugh, Exhausting
So, today I spoke with my case worker. She told me a decision would be made today or tomorrow about my disability claim. I won't find out until the paperwork is mailed though.... Which sucks. Also, I just had my cervical spine mri today and I have a nerve conductivity test tomorrow... I'm sure they don't have my brainwave tests results and they haven't gotten the notes from my new neurologist. In other words, they have all of my notes from tests that were normal and my first neurologist who thought I was crazy. ... I guess the crazy bit could get me some money, but doubtful. One thing I know is I'm out of money and I am unable to work. I feel like just putting the comforter over my head and cocooning into nothingness because I'm pretty much useless at this point.
My right foot doesn't do what it's supposed to. This is weird to me... The part where it's been consistent and lasted for days. I can't move it upward. I have this weird-looking limp walk and require an arm to hold... I don't like this game. Sometimes I can get it to move upward a little, but it feels like there is something inside my foot blocking the entire motion. Then I start to shake a strange shake. And, after that, I stop trying all together.
I was able to get something for someone to see... My hand became numb over the weekend and then it became swollen. I showed it to my fiance and sure enough he saw it. Then it happened again the next night. He also noticed my ankle and knee to be a little swollen and my calf. These are good things in my eyes because at least other people can experience them, too. It's not just my and my psychogenic-being.
I want to bargain with my disability decision makers and say, "I promise, pinkie-swear, that after they diagnose me and find a way to fix me, I promise I'll go back to work and pay it forward." But, they need me to be permanently disabled??? Soooo.... I can't(?) say things like that. I wish I could though. I'm not one of these people that don't need it, just asking for a hand-out because I don't want to work. Well, of course, I don't want to work, but that isn't why I'm asking for disability. I actually NEED it because at this point I can't even be a greeter at Walmart. (not that that's a bad thing, I just mean I can't even stand around and say hello to people). I know emotions don't count for anything, but, it sucks being like this. I didn't ask for the inability to move when I want to or the pain when I do anything or the loss of memory. I prided myself on my vocabulary and my memory, and my organizational skills. Now, nothing. I'm writing notes all over the house and STILL don't remember. I go from one moment in life to another without knowing how or for what reason I got there. These are not happy things.
If trading these things meant I could get a job like everyone else or at least settle for whomever will hire me because there are no jobs, I would. Just to know that I was ABLE to provide for myself and my family is everything. Being dependent on everyone around me isn't something I feel like getting used to. I can't stand it. "NO, don't help me carry my bag!" Even though I'm stumbling and toppling over like a limp puppet. "I will NOT use that cane!" Even though I can't walk to the kitchen without grabbing everything in my path for balance and coordination AND weight assistance. And, I know I should quit smoking, but smoking is the only thing that I can consistently do and do well. It's the only thing I don't need help with yet. I'm not forgetting how to use my lighter or to pick up another one. Although, my fingers can't always hold onto a stick and sometimes I do need to use both hands to light the lighter.... I sometimes need help... Gah! Now that I'm writing this, I'm realizing even THAT I can't do consistently.
I wish I had followers to comment and share their opinions or issues or complications. At least I wouldn't feel so isolated and lonely. These things make me feel so alone. No one I know understands what I'm going through. It isn't until tears come out or there was the actual visually apparent swelling that people really acknowledge... even then they don't because they can't. Not unless they've been here.
Whatever, OK, yeah.
My right foot doesn't do what it's supposed to. This is weird to me... The part where it's been consistent and lasted for days. I can't move it upward. I have this weird-looking limp walk and require an arm to hold... I don't like this game. Sometimes I can get it to move upward a little, but it feels like there is something inside my foot blocking the entire motion. Then I start to shake a strange shake. And, after that, I stop trying all together.
I was able to get something for someone to see... My hand became numb over the weekend and then it became swollen. I showed it to my fiance and sure enough he saw it. Then it happened again the next night. He also noticed my ankle and knee to be a little swollen and my calf. These are good things in my eyes because at least other people can experience them, too. It's not just my and my psychogenic-being.
I want to bargain with my disability decision makers and say, "I promise, pinkie-swear, that after they diagnose me and find a way to fix me, I promise I'll go back to work and pay it forward." But, they need me to be permanently disabled??? Soooo.... I can't(?) say things like that. I wish I could though. I'm not one of these people that don't need it, just asking for a hand-out because I don't want to work. Well, of course, I don't want to work, but that isn't why I'm asking for disability. I actually NEED it because at this point I can't even be a greeter at Walmart. (not that that's a bad thing, I just mean I can't even stand around and say hello to people). I know emotions don't count for anything, but, it sucks being like this. I didn't ask for the inability to move when I want to or the pain when I do anything or the loss of memory. I prided myself on my vocabulary and my memory, and my organizational skills. Now, nothing. I'm writing notes all over the house and STILL don't remember. I go from one moment in life to another without knowing how or for what reason I got there. These are not happy things.
If trading these things meant I could get a job like everyone else or at least settle for whomever will hire me because there are no jobs, I would. Just to know that I was ABLE to provide for myself and my family is everything. Being dependent on everyone around me isn't something I feel like getting used to. I can't stand it. "NO, don't help me carry my bag!" Even though I'm stumbling and toppling over like a limp puppet. "I will NOT use that cane!" Even though I can't walk to the kitchen without grabbing everything in my path for balance and coordination AND weight assistance. And, I know I should quit smoking, but smoking is the only thing that I can consistently do and do well. It's the only thing I don't need help with yet. I'm not forgetting how to use my lighter or to pick up another one. Although, my fingers can't always hold onto a stick and sometimes I do need to use both hands to light the lighter.... I sometimes need help... Gah! Now that I'm writing this, I'm realizing even THAT I can't do consistently.
I wish I had followers to comment and share their opinions or issues or complications. At least I wouldn't feel so isolated and lonely. These things make me feel so alone. No one I know understands what I'm going through. It isn't until tears come out or there was the actual visually apparent swelling that people really acknowledge... even then they don't because they can't. Not unless they've been here.
Whatever, OK, yeah.
Thursday, October 27, 2011
What's With The Pain???
So, for the past few days I've had a lot of pain. Random, still, but pain. It changes from sharp to dull to achy to heaviness. It is mostly a feeling of heaviness in my legs that is achy and pain in the bottom of my feet. My shoulders are also feeling this and my arms feel heavy. It's hard to make it through a day, and I am not able to complete nearly all of the tasks I assign myself... not that there are many.
All in all, this sucks.
Friday, October 21, 2011
Question Posted in Medhelp.org
I posted this as a question to an online forum. I don't think I have ever done that before. We'll see how it goes. Thought I would document it in this here ol' blog.
I have been having odd "neurological" type symptoms for the past 4 mos. It started with having a constant feeling of dizziness. It isn't necessarily a vertigo, but an off-balance feeling. Within a few weeks I started having temporary numbness in my fingers and hands and weakness when trying to utilize my fingers to type, open, carry things etc. Then after a week I started to have a tremor in my (mostly right) hands. Then I noticed my legs and feet (especially around my ankles (mostly right)) starting to go numb and not responding to my brain. I would think I was doing something, like walking, and realize my feet weren't moving. My gait changed and within a few more weeks my knees started to tremor. During this whole time I have also had odd sensations, like electricity, going through different body parts. And, pain that ranged from a dull ache to feeling pain when being touched. Most of my symptoms come and go unexpectedly to a point. I may have a good day, but then they come back. Only constant is the dizziness.
I went to one neurologist and he gave me xanax and said it was anxiety. He sent me to a psychiatrist. The psychaitrist thinks it's neurological and sent me to another neurologist. This neurologist is sending me to get tests done and on the order form it says "Diagnosis: Vertigo/Dizziness, Tremor-psychogenic, paresthesia-generalized, weakness-muscle, malaise/fatigue-other, cognitive impairment-mild, memory loss, mri of brain was normal, worried about demyelinating disease." I have many other symptoms as well, such as cognitive issues that started with this.
I don't know whether this neurologist thinks I'm having psychological issues or neurological issues because of the coupling of "tremor-psychogenic" and "worried about demyelinating disease." I am afraid that if he's classifying the tremor as psychogenic, he is thinking all of my symptoms are psychogenic.
Are there demyelinating or other neurological diseases that cause a psychogenic tremor??? My anxiety level has gone up severely since all of these symptoms appeared. Could the numbness and inability to move my body have triggered a psychogenic tremor? I have an aunt with ms and obviously a 27 yr old female who suddenly lost the use of her hands is going to think the worst.
I just am concerned with being sent away, back to a therapist when I know there is something wrong with me even if tests don't show it.
I went to one neurologist and he gave me xanax and said it was anxiety. He sent me to a psychiatrist. The psychaitrist thinks it's neurological and sent me to another neurologist. This neurologist is sending me to get tests done and on the order form it says "Diagnosis: Vertigo/Dizziness, Tremor-psychogenic, paresthesia-generalized, weakness-muscle, malaise/fatigue-other, cognitive impairment-mild, memory loss, mri of brain was normal, worried about demyelinating disease." I have many other symptoms as well, such as cognitive issues that started with this.
I don't know whether this neurologist thinks I'm having psychological issues or neurological issues because of the coupling of "tremor-psychogenic" and "worried about demyelinating disease." I am afraid that if he's classifying the tremor as psychogenic, he is thinking all of my symptoms are psychogenic.
Are there demyelinating or other neurological diseases that cause a psychogenic tremor??? My anxiety level has gone up severely since all of these symptoms appeared. Could the numbness and inability to move my body have triggered a psychogenic tremor? I have an aunt with ms and obviously a 27 yr old female who suddenly lost the use of her hands is going to think the worst.
I just am concerned with being sent away, back to a therapist when I know there is something wrong with me even if tests don't show it.
Tuesday, October 4, 2011
Untitled
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Saturday, October 1, 2011
Cars Drive By
Last night we went over to a friend's house and had dinner. It was a lot of fun. We engaged in much needed belly-laughs and delicious food. Very nice end to a week.
I tried to be as "normal" as possible, but some things can't be hidden... just ignored. So, that's what we all did... At a point I quit trying to be "normal" and just was.
Having the luxury of allowance without judgement is incredible. So, I take a little longer to do things... And, so, I can't find words... And, so, my vocabulary has fallen to a 7th grade level at times... Roll it in with jokes or overlook, and we're gravy. I've found there aren't very many places other than home where I am comfortable enough to let my guards down. Last night, like most times we visit, I could. A couple of beers and full tummies later, and even I can stop caring about the frustrations of inability.
I haven't written much this week. I've been too distracted and unmotivated. I did go to see an ENT about possible inner ear involvement with the dizzies...
I started having hand and leg tremors prior to even arriving. Filling out the new patient paperwork was a tedious experience. I was enjoying the waiting time because it gave me an excuse to read. It was peaceful. The office is also used for plastic surgery and spa treatments, so the decor was one of the most calming I've seen. The dark wood of the doors and counters meshed very nicely with the dark greens and purples. The doors were fixed with antique-brass knobs. The waiting area seating wasn't uncomfortable pleather chairs, but instead warm and inviting love seats. I occasionally looked out the second-floor window to see the cars drive by on the road next to medical building. I watched the small people get out of their small cars and walk out of sight. The experience was very relaxing.
When I was called back into the room, the nurse told me to stop being so nervous... They "don't bite." I told her I wasn't nervous... that it was all very calming. The rooms themselves were also done-up in the greens, purples, brass, and dark wood of the foyer. I wasn't sat on a table, oh no, it was a chair. Again, it was much more luxurious than I'm used to. I felt a little like I might be attacked with scented candles and Botox, but that didn't detract from the peace of being removed from the highly distractible world beyond the office doors.
As I sat waiting for the doctor, I started thinking about ways to incorporate their schemes, fixtures, and fogged glass into my own home.
The specialist finally made it to me. He was a young doctor, probably very fresh out of school with strawberry blond hair and a fair complexion. "There's definitely some Irish in that man," I thought to myself.
He examined me: ears, nose, and even throat. When he was done he said, "These symptoms have absolutely nothing to do with your ears."
"I've gone over your symptoms and every possibility, and there is nothing I can correlate with an inner ear problem. It's good you're going to a second neurologist. Stop taking the meclizine. You don't need it, and it may even be hurting the situation."
I thought to myself, "Good, I haven't been taking it because I was never able to get the prescription filled! Plus less cash for meds... Good thing."
He continued,
"This is good and bad. You don't have any of these issues wrong with you, but at the same time that means it's due to some other issue. At least knowing it isn't your ear allows you to narrow down your search. I know you want answers, but the best thing I can say is, stop taking the meclizine... Oh, and I encourage you to quit smoking because it's bad for you. That's it though."
Everything he had said about narrowing down the search I was already thinking. Crossing one off and adding to another... So, now I can know, in my heart, with certainty the dizziness is caused by this "neuro-or-whatever" thing that is all-inclusive. Neurological disorders that include dizziness as a symptom... My basket is overflowing with possibilities! If it turned out that my dizziness was caused by an inner ear malfunction, my load would be lighter, but this is how it goes.
I can't wait to see the neurologist!!!! Even if it is just an initial consultation.
Now for my Saturday to begin (I don't count playing around on inter-webs and blogging as "beginning"). In store for me is an nice evening alone with the man and an episode or two of This American Life. Some light shopping and housework is on the agenda, but I'm just going to enjoy my moments of a sunny, Fall weekend.
It's a beautiful time with the sunshine and cool breeze as my companion.
 |
| (Driving into the city...) |
Last night we went over to a friend's house and had dinner. It was a lot of fun. We engaged in much needed belly-laughs and delicious food. Very nice end to a week.
I tried to be as "normal" as possible, but some things can't be hidden... just ignored. So, that's what we all did... At a point I quit trying to be "normal" and just was.
Having the luxury of allowance without judgement is incredible. So, I take a little longer to do things... And, so, I can't find words... And, so, my vocabulary has fallen to a 7th grade level at times... Roll it in with jokes or overlook, and we're gravy. I've found there aren't very many places other than home where I am comfortable enough to let my guards down. Last night, like most times we visit, I could. A couple of beers and full tummies later, and even I can stop caring about the frustrations of inability.
I haven't written much this week. I've been too distracted and unmotivated. I did go to see an ENT about possible inner ear involvement with the dizzies...
I started having hand and leg tremors prior to even arriving. Filling out the new patient paperwork was a tedious experience. I was enjoying the waiting time because it gave me an excuse to read. It was peaceful. The office is also used for plastic surgery and spa treatments, so the decor was one of the most calming I've seen. The dark wood of the doors and counters meshed very nicely with the dark greens and purples. The doors were fixed with antique-brass knobs. The waiting area seating wasn't uncomfortable pleather chairs, but instead warm and inviting love seats. I occasionally looked out the second-floor window to see the cars drive by on the road next to medical building. I watched the small people get out of their small cars and walk out of sight. The experience was very relaxing.
When I was called back into the room, the nurse told me to stop being so nervous... They "don't bite." I told her I wasn't nervous... that it was all very calming. The rooms themselves were also done-up in the greens, purples, brass, and dark wood of the foyer. I wasn't sat on a table, oh no, it was a chair. Again, it was much more luxurious than I'm used to. I felt a little like I might be attacked with scented candles and Botox, but that didn't detract from the peace of being removed from the highly distractible world beyond the office doors.
As I sat waiting for the doctor, I started thinking about ways to incorporate their schemes, fixtures, and fogged glass into my own home.
The specialist finally made it to me. He was a young doctor, probably very fresh out of school with strawberry blond hair and a fair complexion. "There's definitely some Irish in that man," I thought to myself.
He examined me: ears, nose, and even throat. When he was done he said, "These symptoms have absolutely nothing to do with your ears."
"I've gone over your symptoms and every possibility, and there is nothing I can correlate with an inner ear problem. It's good you're going to a second neurologist. Stop taking the meclizine. You don't need it, and it may even be hurting the situation."
I thought to myself, "Good, I haven't been taking it because I was never able to get the prescription filled! Plus less cash for meds... Good thing."
He continued,
"This is good and bad. You don't have any of these issues wrong with you, but at the same time that means it's due to some other issue. At least knowing it isn't your ear allows you to narrow down your search. I know you want answers, but the best thing I can say is, stop taking the meclizine... Oh, and I encourage you to quit smoking because it's bad for you. That's it though."
Everything he had said about narrowing down the search I was already thinking. Crossing one off and adding to another... So, now I can know, in my heart, with certainty the dizziness is caused by this "neuro-or-whatever" thing that is all-inclusive. Neurological disorders that include dizziness as a symptom... My basket is overflowing with possibilities! If it turned out that my dizziness was caused by an inner ear malfunction, my load would be lighter, but this is how it goes.
I can't wait to see the neurologist!!!! Even if it is just an initial consultation.
Now for my Saturday to begin (I don't count playing around on inter-webs and blogging as "beginning"). In store for me is an nice evening alone with the man and an episode or two of This American Life. Some light shopping and housework is on the agenda, but I'm just going to enjoy my moments of a sunny, Fall weekend.
It's a beautiful time with the sunshine and cool breeze as my companion.
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