jram303
Member
- Joined
- Jan 16, 2015
- Messages
- 23
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CA
- State
- AB
- City
- Calgary
Hello all,
My name is Joe. Firstly, I would like to say that my heart and all of my love goes out to you all. The strength that it takes to be apart of any disease, especially this one, is beyond all measure!
Hmm I don't really know where to begin. I suppose I will start from the top of my story...
I am thirty years old, and divorced unfortunately. From my High school sweetie. Back in 2008, I started to notice some growth in one of my testicles (bare with me, I am fully aware that this is not a testicular cancer site ). I had immediately went to my family GP who wrote the enlargement off as a varicocele (swelling of vascular area) and a lot of anxiety.
Lets' fast forward to 11 months later. I was given an ultrasound after much protest- which revealed what my urologist would later call the largest testicular tumor he had ever seen.
after the surgery I was referred to an oncology department that literally had no answers regarding my post surgery prognosis, as well for my many questions after studying up on the type of cancer I had suffered from. they wanted me back in a months time for a checkup to see what whats happening.
i immediately made an appointment at the Tom Baker Cancer Centre here in calgary. Within the two weeks it took to get booked in and have labs and new scans done, The cancer had metastasized the lymph nodes in my back, neck, and also into one of my lungs. that was the first time that I was misdiagnosed and had to have some intense therapy that was not needed if i was diagnosed at the proper time.
If you are still with me.. THANK YOU! I truly and absolutely appreciate your time. Im getting to the point, Promise!
this week is my 5 year cancer free week! which would normally be a week of celebration. Unfortunately mine was spent in the psychiatric department of a local hospital.
About 6 months ago i started to notice a twitch in my thumb. There would be times when it was a full blown little dance, back and forth back and forth quite rapidly for a while before stopping. This isn't the first time that I had notice this happen. I did notice it on a couple random occasions about a year after finishing chemo (2010). This really got me worried. I have suffered from extreme fatigue and daytime sleepiness ever since i finished chemo, as well as stiff achey muscles ( mainly in my thighs) and terrible exercise intolerance. I mean, if Im having a decent workout, i am puking after no questions asked. Also I have had body wide fascinations ( I know how much this word is hated on here ) for at least a year.
I was booked into see a neuro who after a physical exam- diagnosed me with early onset parkinsons disease...
I was besides myself.
My struggle with cancer had been brutal.. My family being not well off was unable to be with me during any of my treatments. There were times that I was sure I wouldn't see them again. I luckily had the love and support of my ex wives family. But when I just didnt get better after chemo and things kept declining- My wife couldn't take it anymore and left me.
So back to the parkinson deal..
I had been taking the prescribed drugs for about 3 and a half months. And i really didnt feel like I was getting any response really. My neuro kinda threw them at me and said " Im sending you to a movement disorder specialist. Unfortunately, its gonna be about a year before we can get you in to see him. All this best until then." I called my Neuro and told him and he got me in right away. My next worry was ALS...
I got into see him on the friday and I asked him of the possibility of ALS. he said " I saw no signs of ALS whatsoever when I saw you, just stick with the parkinson medication."
I was crushed. this conversations has happened before, and the outcome changed my life in a way that mentally, I didnt think I could come back from. I was ready to end my llfe.
I was at work and had a nervous breakdown. I couldn't keep the tears back, and the fear of ALS lingered in my mind. It still does. I told my friend and co worker what was happening, and what I felt was the solution. He was very worried and after some talking, and much convincing, we went to the emerge department where i was placed on suicide watch.
The staff at this hospital was absolutely amazing. The resident doc genuinely cared so much about my situation, and gave me a physical exam. afterwards he said " not only do i not see any signs of ALS, I don't see any sign of Parkinsons. I didnt even know what to say.. I was absolutely in disbelief. " How could i not have parkinsons?" This only heightened my anxiety.
Luckily my psychiatrist and Dr Cully were very empathetic in my worry, as well as sensitive to my past luck with the medical field. They had another neuro come and take a look at me.
This neuro was quite thorough, but also seemed to breeze through a physical exam. After it was all finished he said " It is embarassing that a neuro would tell you that you have parkinson disease. I also see no cause to consider ALS."
I was still so terribly worried. i know that there is something going on with my body, its just a matter of finding it out.. Dr Cully being the great fella that he is put in for an EMG order and got it done JUST TODAY FOR ME! I honestly couldn't believe it. He really is an amazing doc.
During the EMG i was so worried. They started off doing the thumb hand and arm that I had been having the fasicullations in. And everything seemed to be just fine. The nerves were reacting great, and there seemed to be no sign of atrophy.
This was a relief.
But then he got down to my left foot and started to EMG there...
There was one nerve on the outside of my foot that was not really responding well. Also he noted some atrophy under the big bone on my ankle. I was so beyond terrified. I still am quite terrified to be honest. He was very thorough in explaining everything to me, and had said that this looked like it was an isolate nerve damage, one that could have been done from injury, and the rest of the nerves in my foot were responding fine. I grew up skateboarding, and have rolled my ankle quite badly multiple times. He told me that this didnt look like the kind of damage that you would see in ALS.
He then did another thorough physical exam and said that he didnt see anything that resembled ALS. He then told me that the only case of ALS he had seen in his career in someone form my age, was a case of hereditary ALS.
I thought that i would be elated! It was like a double win for me! No Parkinsons?! How could this be?! And also my fear of ALS (Should) completely quelled..
But this one bad nerve response and ankle atrophy is already eating me alive.
Is it possible that he could really tell the difference about that through the EMG?
Here I sit with this terrible feeling in my stomach that this is another misdiagnosis, only with a worse outcome.
I hope that you guys were able to stay with me through all the rambling, and that my story hasn't offended anyone or wasted anyones time on here. I also know that everyone on here has more than a handful of dealings with worry worts like myself on here. This one thing is just eating at me quite badly... It says on the report after marking the " isolate injury" to the perennial nerve, that there is no sign, clinical or physical of ALS or parkinson disease. I hope that this is right, and that I am truly over thinking this. Any sort of commentary is much appreciated. Thank you all so very very much for your time,
Joe
My name is Joe. Firstly, I would like to say that my heart and all of my love goes out to you all. The strength that it takes to be apart of any disease, especially this one, is beyond all measure!
Hmm I don't really know where to begin. I suppose I will start from the top of my story...
I am thirty years old, and divorced unfortunately. From my High school sweetie. Back in 2008, I started to notice some growth in one of my testicles (bare with me, I am fully aware that this is not a testicular cancer site ). I had immediately went to my family GP who wrote the enlargement off as a varicocele (swelling of vascular area) and a lot of anxiety.
Lets' fast forward to 11 months later. I was given an ultrasound after much protest- which revealed what my urologist would later call the largest testicular tumor he had ever seen.
after the surgery I was referred to an oncology department that literally had no answers regarding my post surgery prognosis, as well for my many questions after studying up on the type of cancer I had suffered from. they wanted me back in a months time for a checkup to see what whats happening.
i immediately made an appointment at the Tom Baker Cancer Centre here in calgary. Within the two weeks it took to get booked in and have labs and new scans done, The cancer had metastasized the lymph nodes in my back, neck, and also into one of my lungs. that was the first time that I was misdiagnosed and had to have some intense therapy that was not needed if i was diagnosed at the proper time.
If you are still with me.. THANK YOU! I truly and absolutely appreciate your time. Im getting to the point, Promise!
this week is my 5 year cancer free week! which would normally be a week of celebration. Unfortunately mine was spent in the psychiatric department of a local hospital.
About 6 months ago i started to notice a twitch in my thumb. There would be times when it was a full blown little dance, back and forth back and forth quite rapidly for a while before stopping. This isn't the first time that I had notice this happen. I did notice it on a couple random occasions about a year after finishing chemo (2010). This really got me worried. I have suffered from extreme fatigue and daytime sleepiness ever since i finished chemo, as well as stiff achey muscles ( mainly in my thighs) and terrible exercise intolerance. I mean, if Im having a decent workout, i am puking after no questions asked. Also I have had body wide fascinations ( I know how much this word is hated on here ) for at least a year.
I was booked into see a neuro who after a physical exam- diagnosed me with early onset parkinsons disease...
I was besides myself.
My struggle with cancer had been brutal.. My family being not well off was unable to be with me during any of my treatments. There were times that I was sure I wouldn't see them again. I luckily had the love and support of my ex wives family. But when I just didnt get better after chemo and things kept declining- My wife couldn't take it anymore and left me.
So back to the parkinson deal..
I had been taking the prescribed drugs for about 3 and a half months. And i really didnt feel like I was getting any response really. My neuro kinda threw them at me and said " Im sending you to a movement disorder specialist. Unfortunately, its gonna be about a year before we can get you in to see him. All this best until then." I called my Neuro and told him and he got me in right away. My next worry was ALS...
I got into see him on the friday and I asked him of the possibility of ALS. he said " I saw no signs of ALS whatsoever when I saw you, just stick with the parkinson medication."
I was crushed. this conversations has happened before, and the outcome changed my life in a way that mentally, I didnt think I could come back from. I was ready to end my llfe.
I was at work and had a nervous breakdown. I couldn't keep the tears back, and the fear of ALS lingered in my mind. It still does. I told my friend and co worker what was happening, and what I felt was the solution. He was very worried and after some talking, and much convincing, we went to the emerge department where i was placed on suicide watch.
The staff at this hospital was absolutely amazing. The resident doc genuinely cared so much about my situation, and gave me a physical exam. afterwards he said " not only do i not see any signs of ALS, I don't see any sign of Parkinsons. I didnt even know what to say.. I was absolutely in disbelief. " How could i not have parkinsons?" This only heightened my anxiety.
Luckily my psychiatrist and Dr Cully were very empathetic in my worry, as well as sensitive to my past luck with the medical field. They had another neuro come and take a look at me.
This neuro was quite thorough, but also seemed to breeze through a physical exam. After it was all finished he said " It is embarassing that a neuro would tell you that you have parkinson disease. I also see no cause to consider ALS."
I was still so terribly worried. i know that there is something going on with my body, its just a matter of finding it out.. Dr Cully being the great fella that he is put in for an EMG order and got it done JUST TODAY FOR ME! I honestly couldn't believe it. He really is an amazing doc.
During the EMG i was so worried. They started off doing the thumb hand and arm that I had been having the fasicullations in. And everything seemed to be just fine. The nerves were reacting great, and there seemed to be no sign of atrophy.
This was a relief.
But then he got down to my left foot and started to EMG there...
There was one nerve on the outside of my foot that was not really responding well. Also he noted some atrophy under the big bone on my ankle. I was so beyond terrified. I still am quite terrified to be honest. He was very thorough in explaining everything to me, and had said that this looked like it was an isolate nerve damage, one that could have been done from injury, and the rest of the nerves in my foot were responding fine. I grew up skateboarding, and have rolled my ankle quite badly multiple times. He told me that this didnt look like the kind of damage that you would see in ALS.
He then did another thorough physical exam and said that he didnt see anything that resembled ALS. He then told me that the only case of ALS he had seen in his career in someone form my age, was a case of hereditary ALS.
I thought that i would be elated! It was like a double win for me! No Parkinsons?! How could this be?! And also my fear of ALS (Should) completely quelled..
But this one bad nerve response and ankle atrophy is already eating me alive.
Is it possible that he could really tell the difference about that through the EMG?
Here I sit with this terrible feeling in my stomach that this is another misdiagnosis, only with a worse outcome.
I hope that you guys were able to stay with me through all the rambling, and that my story hasn't offended anyone or wasted anyones time on here. I also know that everyone on here has more than a handful of dealings with worry worts like myself on here. This one thing is just eating at me quite badly... It says on the report after marking the " isolate injury" to the perennial nerve, that there is no sign, clinical or physical of ALS or parkinson disease. I hope that this is right, and that I am truly over thinking this. Any sort of commentary is much appreciated. Thank you all so very very much for your time,
Joe