xtczero
New member
- Joined
- Nov 3, 2009
- Messages
- 6
- Reason
- Learn about ALS
- Country
- Au
- State
- Qld
- City
- Robina
Hi all
I've been silently browsing the forums for a while now & thought its time to share my journey which has brought me to your forum and I pray everyday I don't have this or some other dreadful disease.
I hope you all don't mind me posting this & apologies for it being so long.
I have not been diagnosed with anything yet, however ALS/MND is 1 of many "possibilities" that hangs heavily over my head at this point.
Maybe some people who come here with the "ALS fear" might appreciate hearing my journey and find some comfort in knowing there's others going through the diagnosis phase, its scary for us all & we all go through the insane moments where we somehow connect a symptom to this disease. Not everything is ALS even if your symptoms may suggest they fit. Try not to let it rule your life & get off Dr google, he's the worst Dr you will ever visit!
I haven't listed all of my symptoms below, just a few to tell the story.....
6 months ago I was a healthy 32 year old fit athletic father who did 24hr mountain bike races as a sport, had bundles of energy and the world in front of me to conquer.
fast forward 1 month and I was in the ER having a heart attack with unknown origins, flu like symptoms, rhabdomolysis & other issues, after a miriad of tests my heart was given the all clear and after a further month of more & more muscles problems becoming apparent they eventually concluded it was my cholesterol medication causing the issues (As if the rhabdo shouldn't have given that away a month earlier!).
After coming off the meds I improved for 2 weeks, I felt amazingly well so I jumped back on the bike & went for a casual ride, what a mistake that would prove to be.
A few hours after the ride I started to feel funny, next thing I was twitching all over & felt exhausted, after a couple of days of this I went to the Dr's who referred me to a neurologist. This would start my journey into the world I now live of having test after test.
The 1st neurologist I went to spent 5 mintues listening to my story, did a half baked exam, concluded i'm suffering from migraines and sent me on my way with some medication, migraines? i've never had a migraine in my life, infact the only time I ever get a headache is if I have the flu. Anyway, niavely assuming he was the expert I took his diagnosis as right & collected my meds, the medication caused more twitching and spasms along with liver problems so I had to stop it after 4 days. On my return visit he concluded i'm suffering anxiety and I should get it treated.
What a downer, if there's 1 thing I can say about myself is i've never been the anxiety type of person, being a typical male I can switch off my emotional side like lightening (just ask my wife ). Then the mind games started.... could this be all in my mind, can my mind control me physically like this, how can I switch this off etc etc....
However, things just didn't seem right, I wasn't convinced anxiety could cause all the problems I was having, so after moving States (as if I didn't have enough going on I had to move States and start a new job) I decided to pursue this with new Dr's. I went to a local GP who was excellent, she was well up with the muscular problems Statins can cause and ran a miriad of blood tests, everything came back fine except my CPK was elevated at around 700. This was unusual as i'd been off the statins for a couple of months and there was no obvious reason why it should be elevated. Given this and my many physical problems including the odd random fasciculations + some weird thing going on with both quad muscles (kinda like fascics but more ripply/worms under the skin kind of thing and only when I flex them) she suggested I may have some kind of muscle disease like a dystrophy that the statins may have uncovered and I should get into a good neuro immediately for further testing.
So the Dr booked me in with a reputable neuro and I managed to get in after a couple days due to a cancellation(what luck because it was going to be mid january otherwise)
I went for my appointment and the neuro spent at least 20 minutes talking to me, asking about my history of problems etc. Wow, a Dr that actually spends time listening, this has gotta be a 1st!
He then did a full physical exam, which was all good, except my ankle reflexes seemed a bit low and then he decided to do a NCS and Needle EMG on 1 leg (thigh & calf). It all came back negative. So he then spent another 15 mintues telling me his toughts and what things could be causing my complaints etc. He finished up by saying I may have some kind of muscle or metabolic disease but he didn't think I had too much to worry about, the fascics may just be benign and he would see me in 3 months to see if anything had changed, I was free to get back to excercising. Well I was on top of the world when I left, that was the best i'd hoped for, a reputable neuro had actually given me the time of day and not pushed me out the door with some "here try this pills" and on top of that everything was looking good.
So I jumped back on the bike, did 3 rides over 3 days and that is when things really changed. I on the 4th day I felt exhausted, I was just so tired & fatigued I had to lie on the lounge for a day sleeping to regain some strength. then I noticed my palate felt like it had dropped, I woke up 1 night kind of snorting & carrying on & it felt like it was resting on my tongue if that makes any sense to anyone.. it was a horroble feeling anyway. Then the muscles all around my left eye started to hurt in an over used fatigued kind of way and my eyelid drooped. Then I was somewhere where I had to talk louder and my voice disappeared on me after about 5 minutes & when it came back it was gravelly for many days afterwards.
This is when the panic kicked in, my Dr googling on BFS told me these things don't happen so it must be something more sinister. Then I started to think back & remembered i'd noticed on & off that my breathing would on occasion go very shallow, it felt like my breathing muscles were fatigued and didn't have the strength to suck air in, then I remembered that when I felt like this I would do alot of yawning ( I assumed because my breathing was shallow I was yawning to get more air in). Then I remembered that i'd been quite emotional on & off for many months, I would tear up when watching real medical emergency type tv shows & there was a few times when i'd just burst into tears when i'd think of the the journey i'd been going through - At the time I thought its been an emotional rollercoaster and I was just releasing my emotions, however then I remembered back further, before all of this happened & I had noticed I was becoming unusually teary over several months prior with no real explanation as to why. Oh & what is this incessant phlem in my throat all about?
Then I started to think back over the last couple of years, I remembered my brother giving me some grief 1 day over having butter fingers because I kept fumbling tools in the garage, i'd had periods on the bike where my quads would get sore (as in the 1st time used kind of sore) and I would struggle to ride at my usual pace for no reason, I'd been to the Dr's a few times over this period complaining of feeling unusually fatigued, could all of this been some early signs of something bad that I hadn't connected?
The dread that filled me at this point was horrendous, i'd come across ALS in my Dr googling but never gave it any consideration, apart from the fascics, I didn't think I fit the ALS picture at all. Then the mind games started again, could all these things be tied together as the start of ALS symptoms? But what about all the other stuff that doesn't fit the ALS picture.... then the reasoning begins (i'm a very logical type of thinker), I have this but I don't have this, so it can't be ALS, but I have this so maybe it could be, grrr shut up brian!
Anyways, I rang the neuro's office and they got me back in, by this time my eye, palate & voice were back to normal, The neuro was alarmed at my newly developed problems and that my fascics had spread like wild fire since he last saw me (although the fascics are never present when he sees me - another positive sign?) and ordered a muscle biopsy to see what's going on with my muscles. He also said it didn't sound like a muscle or metabolic disease, it sounded more CNS. Well, why did he have to say such a thing? CNS.... isn't ALS caused by problems with the CNS rather than the muscles themselves? Talk about that feeling of dread again.
Moving right along, I had the mucle biopsy Tuesday just past, I have just received a call from my neuro's office to say the results are back (wow 2 day turn around that's gotta be a new record) and the neuro wants to see me asap to discuss. So i'm booked in 1st thing Monday morning.
I'm hoping with the quick turn around on the biopsy that they found something definate that steers me right away from ALS, the surgeon told me if the sample is complicated they'll have to use the electron microscope & that will take a much longer time than the standard tests, so this is a good sign. That & they can't or shouldn't diagnose ALS just off a muscle biopsy & some possible bulbar symptoms & with my clean EMG that's an even better sign.
I certainly I don't know if I have ALS I live in hope & pray that its not, I have some things going on that fit the picture but many things that don't, Infact many of my symptoms over the last few months would fit with an MG diagnosis long before ALS, however as human behaviour would have it, my worst fears firmly sits with ALS/MND.
To the PALS on this forum, your encouragment and advice to other people going through the diagnosis phase or to the recently diagnosed are inspiring and have lifted me on those low days when I realise that I don't know what's wrong but I know its not going away and i'm not a simple pill away from being cured.
What ever I have has taken away a significant chunk of my quality of life very rapidly, but I can still walk, talk, eat & breath without drama and the longer i'm able to do that without deteriation the more hope I get that maybe this thing will not progress into something worse than it already is.
My Neuro refers to me as the complicated case because I don't fit any picture entirely, this makes me smile, at least i'm making him work for his money & who knows, maybe my case might appear in a medical journal one day & assist in a cure for something?
Cheers all, i'll keep you posted on my progress
I've been silently browsing the forums for a while now & thought its time to share my journey which has brought me to your forum and I pray everyday I don't have this or some other dreadful disease.
I hope you all don't mind me posting this & apologies for it being so long.
I have not been diagnosed with anything yet, however ALS/MND is 1 of many "possibilities" that hangs heavily over my head at this point.
Maybe some people who come here with the "ALS fear" might appreciate hearing my journey and find some comfort in knowing there's others going through the diagnosis phase, its scary for us all & we all go through the insane moments where we somehow connect a symptom to this disease. Not everything is ALS even if your symptoms may suggest they fit. Try not to let it rule your life & get off Dr google, he's the worst Dr you will ever visit!
I haven't listed all of my symptoms below, just a few to tell the story.....
6 months ago I was a healthy 32 year old fit athletic father who did 24hr mountain bike races as a sport, had bundles of energy and the world in front of me to conquer.
fast forward 1 month and I was in the ER having a heart attack with unknown origins, flu like symptoms, rhabdomolysis & other issues, after a miriad of tests my heart was given the all clear and after a further month of more & more muscles problems becoming apparent they eventually concluded it was my cholesterol medication causing the issues (As if the rhabdo shouldn't have given that away a month earlier!).
After coming off the meds I improved for 2 weeks, I felt amazingly well so I jumped back on the bike & went for a casual ride, what a mistake that would prove to be.
A few hours after the ride I started to feel funny, next thing I was twitching all over & felt exhausted, after a couple of days of this I went to the Dr's who referred me to a neurologist. This would start my journey into the world I now live of having test after test.
The 1st neurologist I went to spent 5 mintues listening to my story, did a half baked exam, concluded i'm suffering from migraines and sent me on my way with some medication, migraines? i've never had a migraine in my life, infact the only time I ever get a headache is if I have the flu. Anyway, niavely assuming he was the expert I took his diagnosis as right & collected my meds, the medication caused more twitching and spasms along with liver problems so I had to stop it after 4 days. On my return visit he concluded i'm suffering anxiety and I should get it treated.
What a downer, if there's 1 thing I can say about myself is i've never been the anxiety type of person, being a typical male I can switch off my emotional side like lightening (just ask my wife ). Then the mind games started.... could this be all in my mind, can my mind control me physically like this, how can I switch this off etc etc....
However, things just didn't seem right, I wasn't convinced anxiety could cause all the problems I was having, so after moving States (as if I didn't have enough going on I had to move States and start a new job) I decided to pursue this with new Dr's. I went to a local GP who was excellent, she was well up with the muscular problems Statins can cause and ran a miriad of blood tests, everything came back fine except my CPK was elevated at around 700. This was unusual as i'd been off the statins for a couple of months and there was no obvious reason why it should be elevated. Given this and my many physical problems including the odd random fasciculations + some weird thing going on with both quad muscles (kinda like fascics but more ripply/worms under the skin kind of thing and only when I flex them) she suggested I may have some kind of muscle disease like a dystrophy that the statins may have uncovered and I should get into a good neuro immediately for further testing.
So the Dr booked me in with a reputable neuro and I managed to get in after a couple days due to a cancellation(what luck because it was going to be mid january otherwise)
I went for my appointment and the neuro spent at least 20 minutes talking to me, asking about my history of problems etc. Wow, a Dr that actually spends time listening, this has gotta be a 1st!
He then did a full physical exam, which was all good, except my ankle reflexes seemed a bit low and then he decided to do a NCS and Needle EMG on 1 leg (thigh & calf). It all came back negative. So he then spent another 15 mintues telling me his toughts and what things could be causing my complaints etc. He finished up by saying I may have some kind of muscle or metabolic disease but he didn't think I had too much to worry about, the fascics may just be benign and he would see me in 3 months to see if anything had changed, I was free to get back to excercising. Well I was on top of the world when I left, that was the best i'd hoped for, a reputable neuro had actually given me the time of day and not pushed me out the door with some "here try this pills" and on top of that everything was looking good.
So I jumped back on the bike, did 3 rides over 3 days and that is when things really changed. I on the 4th day I felt exhausted, I was just so tired & fatigued I had to lie on the lounge for a day sleeping to regain some strength. then I noticed my palate felt like it had dropped, I woke up 1 night kind of snorting & carrying on & it felt like it was resting on my tongue if that makes any sense to anyone.. it was a horroble feeling anyway. Then the muscles all around my left eye started to hurt in an over used fatigued kind of way and my eyelid drooped. Then I was somewhere where I had to talk louder and my voice disappeared on me after about 5 minutes & when it came back it was gravelly for many days afterwards.
This is when the panic kicked in, my Dr googling on BFS told me these things don't happen so it must be something more sinister. Then I started to think back & remembered i'd noticed on & off that my breathing would on occasion go very shallow, it felt like my breathing muscles were fatigued and didn't have the strength to suck air in, then I remembered that when I felt like this I would do alot of yawning ( I assumed because my breathing was shallow I was yawning to get more air in). Then I remembered that i'd been quite emotional on & off for many months, I would tear up when watching real medical emergency type tv shows & there was a few times when i'd just burst into tears when i'd think of the the journey i'd been going through - At the time I thought its been an emotional rollercoaster and I was just releasing my emotions, however then I remembered back further, before all of this happened & I had noticed I was becoming unusually teary over several months prior with no real explanation as to why. Oh & what is this incessant phlem in my throat all about?
Then I started to think back over the last couple of years, I remembered my brother giving me some grief 1 day over having butter fingers because I kept fumbling tools in the garage, i'd had periods on the bike where my quads would get sore (as in the 1st time used kind of sore) and I would struggle to ride at my usual pace for no reason, I'd been to the Dr's a few times over this period complaining of feeling unusually fatigued, could all of this been some early signs of something bad that I hadn't connected?
The dread that filled me at this point was horrendous, i'd come across ALS in my Dr googling but never gave it any consideration, apart from the fascics, I didn't think I fit the ALS picture at all. Then the mind games started again, could all these things be tied together as the start of ALS symptoms? But what about all the other stuff that doesn't fit the ALS picture.... then the reasoning begins (i'm a very logical type of thinker), I have this but I don't have this, so it can't be ALS, but I have this so maybe it could be, grrr shut up brian!
Anyways, I rang the neuro's office and they got me back in, by this time my eye, palate & voice were back to normal, The neuro was alarmed at my newly developed problems and that my fascics had spread like wild fire since he last saw me (although the fascics are never present when he sees me - another positive sign?) and ordered a muscle biopsy to see what's going on with my muscles. He also said it didn't sound like a muscle or metabolic disease, it sounded more CNS. Well, why did he have to say such a thing? CNS.... isn't ALS caused by problems with the CNS rather than the muscles themselves? Talk about that feeling of dread again.
Moving right along, I had the mucle biopsy Tuesday just past, I have just received a call from my neuro's office to say the results are back (wow 2 day turn around that's gotta be a new record) and the neuro wants to see me asap to discuss. So i'm booked in 1st thing Monday morning.
I'm hoping with the quick turn around on the biopsy that they found something definate that steers me right away from ALS, the surgeon told me if the sample is complicated they'll have to use the electron microscope & that will take a much longer time than the standard tests, so this is a good sign. That & they can't or shouldn't diagnose ALS just off a muscle biopsy & some possible bulbar symptoms & with my clean EMG that's an even better sign.
I certainly I don't know if I have ALS I live in hope & pray that its not, I have some things going on that fit the picture but many things that don't, Infact many of my symptoms over the last few months would fit with an MG diagnosis long before ALS, however as human behaviour would have it, my worst fears firmly sits with ALS/MND.
To the PALS on this forum, your encouragment and advice to other people going through the diagnosis phase or to the recently diagnosed are inspiring and have lifted me on those low days when I realise that I don't know what's wrong but I know its not going away and i'm not a simple pill away from being cured.
What ever I have has taken away a significant chunk of my quality of life very rapidly, but I can still walk, talk, eat & breath without drama and the longer i'm able to do that without deteriation the more hope I get that maybe this thing will not progress into something worse than it already is.
My Neuro refers to me as the complicated case because I don't fit any picture entirely, this makes me smile, at least i'm making him work for his money & who knows, maybe my case might appear in a medical journal one day & assist in a cure for something?
Cheers all, i'll keep you posted on my progress