Scotiaspirit
Distinguished member
- Joined
- Nov 21, 2015
- Messages
- 209
- Reason
- PALS
- Diagnosis
- 11/2015
- Country
- CA
- State
- Nova Scotia
- City
- Dartmouth
Over the last two years I started having what at first was generalized symptoms such as getting muscle cramps and started primarily in my right leg, but gradually over time spread to my left leg and occasionally I would get a cramp in my abdominal area, around the area of my rotator cuff area of my shoulders.
I would start sighing frequently, especially in the evening hours. I cannot give a very strong cough, for some time now. During the early part of the journey with muscle cramps, I was told to make sure I drank eight glasses of water a day and eventually was told to start taking calcium and magnesium, despite my electrolytes and mineral levels be in normal. In the summer of 2014 I just had a generalized soreness in my rotator cuff of my right arm. Other than the cramps and soreness being a bit annoying, they were certainly something I did not even worry or care about.
Fast-forward to October 2015, while doing a couple of auctions I develop severe Charlie horses which thus cause me to cancel my auctions. In late October I started to have muscle fasciculations, that initially started in my right leg and within a couple of days spread to my left leg.
As my family doctor had a previous ALS patient plus looked after two other ALS patients in a nursing home, he suspected that could be a possibility with me (he did not tell me this until after the neurologist concurred with his thoughts). He sent a consultation to a neurologist on that date, been several days after that visit I went to a hospital emergency department, this weakness in my right leg as well as severe cramps and after being evaluated at two separate doctors, one who was a neurologist, he felt I was having problems that was consistent with motor neuron disease. (I did not know at that time motor neuron disease was ALS) Between that time and November 24, I had a battery of medical tests including EMG, nerve conduction studies, bloodwork etc.
The Neurologist diagnosed me with limb onset ALS. I have had follow-up tests including a spinal MRI, a painful lumbar puncture, visits with occupational therapists, physiotherapists, fitted with a BiPAP machine, using a cane, and currently waiting to have speech and swallowing studies done this Thursday. Where I am still fairly newly diagnosed I have asked for a second opinion of my diagnosis just to be sure that a second opinion concurs with the original neurologist.
My most recent visit with my physiotherapist shows I have drop foot, right side in the muscles in my right leg and arm are getting extremely weak. She also recommended that I immediately start using a walker as I've had some close calls with falls recently. My fellow PALS At Our Local ALS Chapter, support group, all advise to make sure I conserve energy, eat lots of high calorie foods, (good quality and nutritional value food) to help maintain weight is very important to trying to live longer with this disease. They also advise me to make sure I separate the wheat from the chaff in how people advise try this or try that.
One of my biggest challenges is maintain composure and hope with my immediate family members as they too are having a challenging time coming to terms with this diagnosis and seeing how my body is losing strength and coordination to this terrible and horrifying disease.
In the last few weeks I'm losing strength in my voice as it has become an raspy, hoarse and also I'm getting frequent cramp like sensations when I chew food and things are getting caught or the sensation of getting caught in my throat when I swallow.
To be honest, these bodily deterioration's are getting scary. My family and I did not expect the weakness and other developing symptoms come on this quickly.
It humbles me to see how brave, compassionate, and helpful other PALS are to the newly diagnosed people like myself with this disease. I admit I have a great deal of fear and apprehension in trying to think ahead of how I will have to cope with declining use of my arms and legs as this disease progresses. It is hard to reconcile to my brain that I can still feel sensation in my toes and for it, yet they are flaccid and there is no muscle resistance to kind of hold my body weight when trying to lean toward my toes. My physiotherapist is going to work with me to try to keep my movement and mobility going for as long as possible while I adjust to the impairments caused by this disease
Thank you for reading or listening and I promise to post again fairly soon all the best Scotiaspirit.
I would start sighing frequently, especially in the evening hours. I cannot give a very strong cough, for some time now. During the early part of the journey with muscle cramps, I was told to make sure I drank eight glasses of water a day and eventually was told to start taking calcium and magnesium, despite my electrolytes and mineral levels be in normal. In the summer of 2014 I just had a generalized soreness in my rotator cuff of my right arm. Other than the cramps and soreness being a bit annoying, they were certainly something I did not even worry or care about.
Fast-forward to October 2015, while doing a couple of auctions I develop severe Charlie horses which thus cause me to cancel my auctions. In late October I started to have muscle fasciculations, that initially started in my right leg and within a couple of days spread to my left leg.
As my family doctor had a previous ALS patient plus looked after two other ALS patients in a nursing home, he suspected that could be a possibility with me (he did not tell me this until after the neurologist concurred with his thoughts). He sent a consultation to a neurologist on that date, been several days after that visit I went to a hospital emergency department, this weakness in my right leg as well as severe cramps and after being evaluated at two separate doctors, one who was a neurologist, he felt I was having problems that was consistent with motor neuron disease. (I did not know at that time motor neuron disease was ALS) Between that time and November 24, I had a battery of medical tests including EMG, nerve conduction studies, bloodwork etc.
The Neurologist diagnosed me with limb onset ALS. I have had follow-up tests including a spinal MRI, a painful lumbar puncture, visits with occupational therapists, physiotherapists, fitted with a BiPAP machine, using a cane, and currently waiting to have speech and swallowing studies done this Thursday. Where I am still fairly newly diagnosed I have asked for a second opinion of my diagnosis just to be sure that a second opinion concurs with the original neurologist.
My most recent visit with my physiotherapist shows I have drop foot, right side in the muscles in my right leg and arm are getting extremely weak. She also recommended that I immediately start using a walker as I've had some close calls with falls recently. My fellow PALS At Our Local ALS Chapter, support group, all advise to make sure I conserve energy, eat lots of high calorie foods, (good quality and nutritional value food) to help maintain weight is very important to trying to live longer with this disease. They also advise me to make sure I separate the wheat from the chaff in how people advise try this or try that.
One of my biggest challenges is maintain composure and hope with my immediate family members as they too are having a challenging time coming to terms with this diagnosis and seeing how my body is losing strength and coordination to this terrible and horrifying disease.
In the last few weeks I'm losing strength in my voice as it has become an raspy, hoarse and also I'm getting frequent cramp like sensations when I chew food and things are getting caught or the sensation of getting caught in my throat when I swallow.
To be honest, these bodily deterioration's are getting scary. My family and I did not expect the weakness and other developing symptoms come on this quickly.
It humbles me to see how brave, compassionate, and helpful other PALS are to the newly diagnosed people like myself with this disease. I admit I have a great deal of fear and apprehension in trying to think ahead of how I will have to cope with declining use of my arms and legs as this disease progresses. It is hard to reconcile to my brain that I can still feel sensation in my toes and for it, yet they are flaccid and there is no muscle resistance to kind of hold my body weight when trying to lean toward my toes. My physiotherapist is going to work with me to try to keep my movement and mobility going for as long as possible while I adjust to the impairments caused by this disease
Thank you for reading or listening and I promise to post again fairly soon all the best Scotiaspirit.
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