Hi... I am currently a resident of the limbo islands but it seems I'll be enjoying an extended stay so I may as well introduce myself 
I am 24 years old and live in Ontario. I have had odd symptoms for years but unfortunately our town is reknowned for poor healthcare and lazy doctors. There aren't enough doctors to go around so if you get ignored most the time and treated like garbage your only other option is to go without completely.
Initial 'big' symptoms started three years ago when I started having episodes of massive muscle twitching. My friends all thought I was having weird seizures but that theory quickly got thrown out with an EEG. When the seizure thing got thrown out ER doctors kept insisting I was either attention seeking and trying to exact revenge on my parents or that my dad had abused me as a kid and the symptoms were all due to the 'deep rooted psychological trauma'. No one would listen long enough to understand that neither of those things were true! There was also the crazy neurologist that made fun of me and prescribed 'enjoying some drinks, finding a boyfriend and getting laid some time so (I) could burn of stress like the rest of the normal population'. My mom was sitting in the room with me at the time and we weren't impressed but in this town there isn't much else you can do.
Fast forward a few years. The twitching episodes have subsided and reduced but been replaced with extreme muscle weakness, fatigue, vision problems, muscle pain/stiffness/cramping, vertigo, etc etc. most symptoms seem to come in waves. I'll have a really bad few days or a week and then it gets better, but being better never really seems as good as it was before. Something's just don't come back right. And now I have problems with one thing or the other almost every day. Particularly balance, weakness and fatigue and difficulty talking. After one of the 'big episodes 3 years ago I came out of it with such a bad stutter and broken speech I couldn't talk for 6-8 weeks. Now everyone can tell as soon as I start getting tired because I'm dragging my leg and the speech problems come back really quickly.
Really everythin gets worse as soon as I'm tired but also physical exertion or getting sick bring out things a lot. But one of the hardest things for me is heat. Sitting out in the sun to watch a friend's football game? Yeah your being carried off the bleachers. Wanting to enjoy a hot relaxing shower? Only if you don't want to be able to stand or do anything for the next hour or so until you cool down with ice packs. Summer time just isn't fun anymore when your always paranoid about having somewhere with shade you can sit down and trying to find ways of cooling down quickly. Not to mention the fact there's no air conditioning in my department at work so temperatures in the labs are consistently high.
Anyways, if you've read this you've probably listened more to me than any doctor has. Lots of slogging between our family doctor and local neurologist. Finally got a referal to a neuro in the big city this year. Things started out hopeful wih him seeming interested but my most recent appointment with him was disappointing. Bad timing of circumstances led to being shrugged off again. Now I am just waiting for something to change that could warrant getting another appointment or things to get really really bad to make another trip to the hospital. Maybe someday I'll be in the right place at the right time and something will click. What we don't understand is that I had an MRI 3 years ago just of my head but they won't check it again to see if anyhing's changed and they also won't even think about looking at my spinal cord. The last appointment my doctors words were 'because the symptoms are across your body it doesn't fit with the pattern of nerve damage for one specific lesion so it won't be a problem in your brain and I am looking at you right now and I can see you don't have any broken vertabra and you also weren't born with any spinal deformations so it would be a waste of time to look at your neck'. Even if he doesn't think that's the case I'd feel much better if he at least tried.
My parents keep hopin it is a simple deficincy of some sort but blood work is the one thing they have been willing to do time and again and everything checked out normal except vitamin B which was marginally low but taking supplements for months didn't make a difference symptom wise. One of my friends is just going through having an MS dx confirmed and she is convinced that I have MS and the more I read the more I relate and more it seems to fit. The good thing is that she is much better at standing up against doctors and so now she is taking up my cause and trying to find new routes for me to try. However the frusterating thin is her Dx has only taken 2 months from when her symptoms started so it also seems a little unfair that she is so lucky to get answers so quickly.
Anyways, I didn't mean for this to be so long but it has stretched out now so I am sorry. Enough about being sick here's a little about me:
I have played classical violin for the better part of 20 years. And have been doing karate for 6. Both are difficult now but I try when I can. I earned my brown belt at the dojo and should be preparing for my black but the past month has been spent watching and spending most of my time helping out with planning events and administrative stuff instead. When I am up to it I help teach and I really like doing weapons on the days I just go slow. I work full time on aircraft electronics. It is a new job but I enjoy it and work in the test department.
My pet rats are my kids and always make me feel better. I have a hairless and a jumbo and their names are Gin and Tonic.
Now I've wasted enough of your time and I'd better start getting ready for work anyways. Good night
I am 24 years old and live in Ontario. I have had odd symptoms for years but unfortunately our town is reknowned for poor healthcare and lazy doctors. There aren't enough doctors to go around so if you get ignored most the time and treated like garbage your only other option is to go without completely.
Initial 'big' symptoms started three years ago when I started having episodes of massive muscle twitching. My friends all thought I was having weird seizures but that theory quickly got thrown out with an EEG. When the seizure thing got thrown out ER doctors kept insisting I was either attention seeking and trying to exact revenge on my parents or that my dad had abused me as a kid and the symptoms were all due to the 'deep rooted psychological trauma'. No one would listen long enough to understand that neither of those things were true! There was also the crazy neurologist that made fun of me and prescribed 'enjoying some drinks, finding a boyfriend and getting laid some time so (I) could burn of stress like the rest of the normal population'. My mom was sitting in the room with me at the time and we weren't impressed but in this town there isn't much else you can do.
Fast forward a few years. The twitching episodes have subsided and reduced but been replaced with extreme muscle weakness, fatigue, vision problems, muscle pain/stiffness/cramping, vertigo, etc etc. most symptoms seem to come in waves. I'll have a really bad few days or a week and then it gets better, but being better never really seems as good as it was before. Something's just don't come back right. And now I have problems with one thing or the other almost every day. Particularly balance, weakness and fatigue and difficulty talking. After one of the 'big episodes 3 years ago I came out of it with such a bad stutter and broken speech I couldn't talk for 6-8 weeks. Now everyone can tell as soon as I start getting tired because I'm dragging my leg and the speech problems come back really quickly.
Really everythin gets worse as soon as I'm tired but also physical exertion or getting sick bring out things a lot. But one of the hardest things for me is heat. Sitting out in the sun to watch a friend's football game? Yeah your being carried off the bleachers. Wanting to enjoy a hot relaxing shower? Only if you don't want to be able to stand or do anything for the next hour or so until you cool down with ice packs. Summer time just isn't fun anymore when your always paranoid about having somewhere with shade you can sit down and trying to find ways of cooling down quickly. Not to mention the fact there's no air conditioning in my department at work so temperatures in the labs are consistently high.
Anyways, if you've read this you've probably listened more to me than any doctor has. Lots of slogging between our family doctor and local neurologist. Finally got a referal to a neuro in the big city this year. Things started out hopeful wih him seeming interested but my most recent appointment with him was disappointing. Bad timing of circumstances led to being shrugged off again. Now I am just waiting for something to change that could warrant getting another appointment or things to get really really bad to make another trip to the hospital. Maybe someday I'll be in the right place at the right time and something will click. What we don't understand is that I had an MRI 3 years ago just of my head but they won't check it again to see if anyhing's changed and they also won't even think about looking at my spinal cord. The last appointment my doctors words were 'because the symptoms are across your body it doesn't fit with the pattern of nerve damage for one specific lesion so it won't be a problem in your brain and I am looking at you right now and I can see you don't have any broken vertabra and you also weren't born with any spinal deformations so it would be a waste of time to look at your neck'. Even if he doesn't think that's the case I'd feel much better if he at least tried.
My parents keep hopin it is a simple deficincy of some sort but blood work is the one thing they have been willing to do time and again and everything checked out normal except vitamin B which was marginally low but taking supplements for months didn't make a difference symptom wise. One of my friends is just going through having an MS dx confirmed and she is convinced that I have MS and the more I read the more I relate and more it seems to fit. The good thing is that she is much better at standing up against doctors and so now she is taking up my cause and trying to find new routes for me to try. However the frusterating thin is her Dx has only taken 2 months from when her symptoms started so it also seems a little unfair that she is so lucky to get answers so quickly.
Anyways, I didn't mean for this to be so long but it has stretched out now so I am sorry. Enough about being sick here's a little about me:
I have played classical violin for the better part of 20 years. And have been doing karate for 6. Both are difficult now but I try when I can. I earned my brown belt at the dojo and should be preparing for my black but the past month has been spent watching and spending most of my time helping out with planning events and administrative stuff instead. When I am up to it I help teach and I really like doing weapons on the days I just go slow. I work full time on aircraft electronics. It is a new job but I enjoy it and work in the test department.
My pet rats are my kids and always make me feel better. I have a hairless and a jumbo and their names are Gin and Tonic.
Now I've wasted enough of your time and I'd better start getting ready for work anyways. Good night
Did you try getting an appointment in another city? I'm assuming when you say big city you mean Toronto, try Ottawa maybe?
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