Scotiaspirit
Distinguished member
- Joined
- Nov 21, 2015
- Messages
- 209
- Reason
- PALS
- Diagnosis
- 11/2015
- Country
- CA
- State
- Nova Scotia
- City
- Dartmouth
I am awaiting a neurologists exam with further testing to either rule out or rule MND as my doctor refers to it. I am now 53 years old.
My symptoms started about 1 1/2 years ago. Over that time, I have lost over 60lbs, unexplained weight loss; despite trying to diet other times in my life, I could never lose weight, and now not even trying to diet, the weight is melting off. I went from a 50 inch waist size now down to 38 and still getting smaller.
People around me, started commenting, Paul, you have lost a lot of weight off your arms and legs, comments, like me arms are getting thin, my legs are getting thin, and my shoulder muscles seems to be wasting away. Actually, prior to last June, I was feeling quite well actually, despite the weight loss. For the last two summers, I have been getting muscle cramps in my legs, started very sporadically, primarily my right leg more than any other part of the body. They really started to increase in frequency in this past summer.
I have been complaining of a weird feeling, not really pain, but like a tiredness in my muscles of the arms and legs for the last nine months, especially after waking up in the morning. My internal medicine specialist, did testing on all the minerals, electrolytes, magnesium, calcium, potassium etc. Was even tried on calcium channel blockers for the cramps, but nothing seemed to help. I have had a neuropathy in my R rib cage for over 25 years and been on Neurontin (Gabapentin) since about 1995.
Recently, since September, my doctors have tested my blood work, electrolytes, kidney function etc., to rule out low electrolytes for causing muscle cramping. They have also been getting progressively weaker, not in a fast way, but gradual slow bit over time. I compare it to having a large rock pile, taking one stone away from it each day, on a daily basis, you do not notice much change, but over a time lapse frame, it is quite noticeable decrease, with physically noticable atrophy in my upper arms and upper leg muscles.
I have had what I would say are very gradual increase in muscle fasciculations, my wife first noticed them, in my right leg. They were pretty active in late October, and I made an appointment with my doctor, and he advised there is something neurological going on, especially with the prior tests finding nothing in the blood work and my urologist did some kidney blood work to rule out any kidney problem for causing these symptoms. (increased frequency in muscle cramping).
In late part of October, the fasciculations started getting to the point of 24/7 and have since spread to both legs, both arms and in my intercostal muscles in the chest area. I do not have pain (other than the let cramps that I now get; and of course the chronic neuropathy in my rib cage which I have had since 1993) and my doctor put me on a drug called Baclofen for the cramping as of one week ago yesterday. When the fasciculations started moving to other parts of my body, he advised that I would need to see a neurologist "sooner rather than later" was his words.
He advised he has treated two other patients with Motor Neuron Disease and he is concerned that I am showing some symptoms of what he called Motor Neurone Disease and reaffirmed that due to my unexplained weight loss, the atrophy of the muscles, have all been ruled out for low electrolytes, low minerals, lyme disease (negative) on two seperate tests done, and they do not feel it is MS related showing up at the age that I am now. BTW, I do have a half sister that has MS and she was diagnosed with the disease at age 33 over 11 years ago and her first and main symptom was sudden blindness. I have not had a symptom like that.
Since October at about Halloween, I woke up one morning and my right ankle had lost about 70% of its motion, the other limbs still have the motion as before, other than I tire easily now. I can still walk without an aid, but have to sort of drag my right foot now. I used to walk several kilometers two to three times per week, especially in the woods, and now my muscles tire after walking several hundred metres, to the point where I have to sit and rest them. This muscle tiredness is progressing quite quickly in the last several weeks. I have also had unexplained episodes of dropping glasses of water, computer mouse etc., out of my right hand on occasion.
Something is obviously progressing at a slow and steady rate. I don't have pain per say, other than the charlie horse cramps that I get from the muscles tiring quickly. I can still feel everything normally, as per sense of touch, etc. I have not lost any feeling of nerve endings.
I used to do speeches at Toastmasters, and the last speech I did in October, I started to get cramping like feeling under my chin muscle toward the end of my speech, which was another new thing to contend with.
I will not know more until the neurologist runs his tests, but if it is determined that I have this disease MND (ALS), it will surely change my life. No matter if it is or is not MND, something is progressing quite rapidly in my body, still a question mark on what the exact causation will be.
Funny thing is, while these symptoms were gradually building in my body, I felt something just wasn't right, but of course one would never think something like this could be the causation.
Until I see my neurologist for the nerve conduction studies and spinal fluid tap, it is still possible I have MND, but of course, there are many other things that could cause this from what I have read. My wife is upset and has a fear, as she has looked after two patients with ALS that were in the nursing home she works at. She knew them well and I asked her what their symptoms were like, and she said, Paul, you really do not want to know.... she just said that they (symptoms) are bad, especially in the later stages of this disease.
I do know something is wrong with me; but until I get the neurologists opinion, I am still hoping it will not be this disease, and I certainly have a great deal of respect and feel so much compassion to those who are suffering from this horrible disease. You are all very brave, and certainly do not deserve to be going through what you are enduring. I am truly amazed at how so many of you cope and keep a positive attitude while enduring so many hardships. You are in my thoughts and prayers.
May the Blessings Be.
Scotiaspirit
My symptoms started about 1 1/2 years ago. Over that time, I have lost over 60lbs, unexplained weight loss; despite trying to diet other times in my life, I could never lose weight, and now not even trying to diet, the weight is melting off. I went from a 50 inch waist size now down to 38 and still getting smaller.
People around me, started commenting, Paul, you have lost a lot of weight off your arms and legs, comments, like me arms are getting thin, my legs are getting thin, and my shoulder muscles seems to be wasting away. Actually, prior to last June, I was feeling quite well actually, despite the weight loss. For the last two summers, I have been getting muscle cramps in my legs, started very sporadically, primarily my right leg more than any other part of the body. They really started to increase in frequency in this past summer.
I have been complaining of a weird feeling, not really pain, but like a tiredness in my muscles of the arms and legs for the last nine months, especially after waking up in the morning. My internal medicine specialist, did testing on all the minerals, electrolytes, magnesium, calcium, potassium etc. Was even tried on calcium channel blockers for the cramps, but nothing seemed to help. I have had a neuropathy in my R rib cage for over 25 years and been on Neurontin (Gabapentin) since about 1995.
Recently, since September, my doctors have tested my blood work, electrolytes, kidney function etc., to rule out low electrolytes for causing muscle cramping. They have also been getting progressively weaker, not in a fast way, but gradual slow bit over time. I compare it to having a large rock pile, taking one stone away from it each day, on a daily basis, you do not notice much change, but over a time lapse frame, it is quite noticeable decrease, with physically noticable atrophy in my upper arms and upper leg muscles.
I have had what I would say are very gradual increase in muscle fasciculations, my wife first noticed them, in my right leg. They were pretty active in late October, and I made an appointment with my doctor, and he advised there is something neurological going on, especially with the prior tests finding nothing in the blood work and my urologist did some kidney blood work to rule out any kidney problem for causing these symptoms. (increased frequency in muscle cramping).
In late part of October, the fasciculations started getting to the point of 24/7 and have since spread to both legs, both arms and in my intercostal muscles in the chest area. I do not have pain (other than the let cramps that I now get; and of course the chronic neuropathy in my rib cage which I have had since 1993) and my doctor put me on a drug called Baclofen for the cramping as of one week ago yesterday. When the fasciculations started moving to other parts of my body, he advised that I would need to see a neurologist "sooner rather than later" was his words.
He advised he has treated two other patients with Motor Neuron Disease and he is concerned that I am showing some symptoms of what he called Motor Neurone Disease and reaffirmed that due to my unexplained weight loss, the atrophy of the muscles, have all been ruled out for low electrolytes, low minerals, lyme disease (negative) on two seperate tests done, and they do not feel it is MS related showing up at the age that I am now. BTW, I do have a half sister that has MS and she was diagnosed with the disease at age 33 over 11 years ago and her first and main symptom was sudden blindness. I have not had a symptom like that.
Since October at about Halloween, I woke up one morning and my right ankle had lost about 70% of its motion, the other limbs still have the motion as before, other than I tire easily now. I can still walk without an aid, but have to sort of drag my right foot now. I used to walk several kilometers two to three times per week, especially in the woods, and now my muscles tire after walking several hundred metres, to the point where I have to sit and rest them. This muscle tiredness is progressing quite quickly in the last several weeks. I have also had unexplained episodes of dropping glasses of water, computer mouse etc., out of my right hand on occasion.
Something is obviously progressing at a slow and steady rate. I don't have pain per say, other than the charlie horse cramps that I get from the muscles tiring quickly. I can still feel everything normally, as per sense of touch, etc. I have not lost any feeling of nerve endings.
I used to do speeches at Toastmasters, and the last speech I did in October, I started to get cramping like feeling under my chin muscle toward the end of my speech, which was another new thing to contend with.
I will not know more until the neurologist runs his tests, but if it is determined that I have this disease MND (ALS), it will surely change my life. No matter if it is or is not MND, something is progressing quite rapidly in my body, still a question mark on what the exact causation will be.
Funny thing is, while these symptoms were gradually building in my body, I felt something just wasn't right, but of course one would never think something like this could be the causation.
Until I see my neurologist for the nerve conduction studies and spinal fluid tap, it is still possible I have MND, but of course, there are many other things that could cause this from what I have read. My wife is upset and has a fear, as she has looked after two patients with ALS that were in the nursing home she works at. She knew them well and I asked her what their symptoms were like, and she said, Paul, you really do not want to know.... she just said that they (symptoms) are bad, especially in the later stages of this disease.
I do know something is wrong with me; but until I get the neurologists opinion, I am still hoping it will not be this disease, and I certainly have a great deal of respect and feel so much compassion to those who are suffering from this horrible disease. You are all very brave, and certainly do not deserve to be going through what you are enduring. I am truly amazed at how so many of you cope and keep a positive attitude while enduring so many hardships. You are in my thoughts and prayers.
May the Blessings Be.
Scotiaspirit
