Alx
New member
- Joined
- Aug 26, 2021
- Messages
- 2
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- CA
Thank you to all who contribute to this forum and the wonderful support,
I'm a male of 31 yo
Where to begin, so in March of 2020 (beginning of the pandemic ironically) I had this vicious cough that lasted for about a week, at the time, I thought I had covid so I voluntarily quarantined for 2 weeks (I live in Canada so I was following public health procedures at the time), I did not get tested because I was a health care worker, which is understandable (again this is march 2020). After said cough had passed, I started experiencing breathing difficulties but not the point of having oxygen deprivation ( I bought an oximeter and had above 94), I eventually got tested for covid and was negative twice , this breathing difficulty is still present to this day.
I eventually booked an appointement with my general practician (GP) that was hard to get given it was the height of the pandemic (this was around July 2020), he booked me for a basic breathing test (not sure it falls under spirometry)to mesure pulmonary volumes and so forth , which turned out okay, although the technicien noticed I was still coughing and there was a decrease in strength when I was forced do long exhales (but nothing of concern), side note, this appoint was in September of 2021 , I was on a long waiting list (again because Canadian health care system). Bottom line, I have to take a second test , this time Asthma test (that I am still waiting at present text).
So what happened between my GP appointement and the breathing test,
-I have developed acid reflux
-In that time my right hand/ arm was stiff and felt weak and wasn't going away (although I'm not sure if I was compensating to hold and lift things, and button my shirts, hence my confusion between perceived and clinical weakness)
I notified my GP at my follow up appointment in September 2021 (also the one where he booked me the asthma test) of these developments, especially the hand and arm , to which he sent to a neuro for an EMG.
So the neuro appointment and EMG test (done in October 2021) was to my relief normal , no apparent limb weakness and my EMG was clean on the right hand and arm (I did read in the guidelines of this forum the EMG test can't detect if it's upper motor functions though that means stiffness and so forth but the neuro did not seem to give a concern about that detail).
At around beginning and through December 2021,
-my right arm/hand stiffness hadn't gone away but started to get twice as bad and I feel trembles (not overtly), with some muscle pain in the bicep, with rare finger twitching
-add to that my throat is blocking up and I'm having difficulty swallowing things at times ( but I'm thinking this is a byproduct of acid reflux or GERD), Gaviscon solves more or less that problem but it's still alarming
-my tongue feels stiff and heavy, also scalloped (but again could this be related to the acid reflux)
-and just recently my right jaw feels weird frozen/in pain and hard to move at times and smile (I have read GERD could cause jaw pain but not sure about muscular difficulties ).
-Still having trouble to breath but this hasn't gotten worse over time , hopefully it plateaued , in fact I thought this was getting better during the summer of 2021 as opposed to 2020
I can still speak and formulate sentences perfectly clearly, although my tongue and right jaw are somewhat of a nuisance and I that matter.
So as some of you may conclude, ALS wasn't the first thought on my mind, even during the EMG test, it's the recent cascade of symptoms in December that made me discover this horrible disease with a lot of what I have adding up to it , and also prompted me to post on these boards.
From what I understood the progression and onset of this disease can vary and right now I'm not sure if the arm issue is something else and that my mouth issues are all asthma / acid reflux related or my ALS onset was in fact my breathing problems and now things are starting to unfold.
thank you for your input and thoughts, and I would like to underline the courage of those diagnosed with this terrible disease
I'm a male of 31 yo
Where to begin, so in March of 2020 (beginning of the pandemic ironically) I had this vicious cough that lasted for about a week, at the time, I thought I had covid so I voluntarily quarantined for 2 weeks (I live in Canada so I was following public health procedures at the time), I did not get tested because I was a health care worker, which is understandable (again this is march 2020). After said cough had passed, I started experiencing breathing difficulties but not the point of having oxygen deprivation ( I bought an oximeter and had above 94), I eventually got tested for covid and was negative twice , this breathing difficulty is still present to this day.
I eventually booked an appointement with my general practician (GP) that was hard to get given it was the height of the pandemic (this was around July 2020), he booked me for a basic breathing test (not sure it falls under spirometry)to mesure pulmonary volumes and so forth , which turned out okay, although the technicien noticed I was still coughing and there was a decrease in strength when I was forced do long exhales (but nothing of concern), side note, this appoint was in September of 2021 , I was on a long waiting list (again because Canadian health care system). Bottom line, I have to take a second test , this time Asthma test (that I am still waiting at present text).
So what happened between my GP appointement and the breathing test,
-I have developed acid reflux
-In that time my right hand/ arm was stiff and felt weak and wasn't going away (although I'm not sure if I was compensating to hold and lift things, and button my shirts, hence my confusion between perceived and clinical weakness)
I notified my GP at my follow up appointment in September 2021 (also the one where he booked me the asthma test) of these developments, especially the hand and arm , to which he sent to a neuro for an EMG.
So the neuro appointment and EMG test (done in October 2021) was to my relief normal , no apparent limb weakness and my EMG was clean on the right hand and arm (I did read in the guidelines of this forum the EMG test can't detect if it's upper motor functions though that means stiffness and so forth but the neuro did not seem to give a concern about that detail).
At around beginning and through December 2021,
-my right arm/hand stiffness hadn't gone away but started to get twice as bad and I feel trembles (not overtly), with some muscle pain in the bicep, with rare finger twitching
-add to that my throat is blocking up and I'm having difficulty swallowing things at times ( but I'm thinking this is a byproduct of acid reflux or GERD), Gaviscon solves more or less that problem but it's still alarming
-my tongue feels stiff and heavy, also scalloped (but again could this be related to the acid reflux)
-and just recently my right jaw feels weird frozen/in pain and hard to move at times and smile (I have read GERD could cause jaw pain but not sure about muscular difficulties ).
-Still having trouble to breath but this hasn't gotten worse over time , hopefully it plateaued , in fact I thought this was getting better during the summer of 2021 as opposed to 2020
I can still speak and formulate sentences perfectly clearly, although my tongue and right jaw are somewhat of a nuisance and I that matter.
So as some of you may conclude, ALS wasn't the first thought on my mind, even during the EMG test, it's the recent cascade of symptoms in December that made me discover this horrible disease with a lot of what I have adding up to it , and also prompted me to post on these boards.
From what I understood the progression and onset of this disease can vary and right now I'm not sure if the arm issue is something else and that my mouth issues are all asthma / acid reflux related or my ALS onset was in fact my breathing problems and now things are starting to unfold.
thank you for your input and thoughts, and I would like to underline the courage of those diagnosed with this terrible disease
