Hans
New member
- Joined
- Dec 30, 2010
- Messages
- 9
- Reason
- Learn about ALS
- Country
- NL
- State
- Noord Holland
- City
- amsterdam
Hello everybody,
I guess I am not the only one here worrying about having MND (in my case: PMSA). I am frightened, spent much time thinking up worst case scenario’s. Need tranquilizers now and then to fence off the worst fears. Hope some of you find the time to read my (case)story below and possible give some advice/answers to the questions that I have (below). Before you read on, basic stuff that you might want to now: I am 46 years old, married, daughter (12). Normally in good physical shape (running, bike), but with a history of bi-polaire depression II (the mild version) and anxietyproblems linked to hypochondria.
My case:
The problems started in october. First pain in my lower back in the morning and also pain a certain spot in the middle of the spine and a weird feeling at several place in my back and arms, as if someone put a small needle in there. I also experienced moments (hours) of extreme cold. These things annoyed me, but I didn't pay too much attention. Then I found myself having a problem urinating. That is, I had to go the bathroom constantly (as much as 10 times in the morning only, as to before maybe 4 times a day). At the same time I experienced a strange feeling in my underbelly, as if muscles there were constantly twitching. Also: a feeling of fatigue in my legs.
After four weeks I went to my doctor who sent me to a neurologist with the suggestion: ‘myopathie/neuropathie?’
By the time (waiting list) of the appointment (mid november) I already had a new thing: fasciculations in my legs (both sides, upper and lower). This is when I started worrying, went on the internet and found out about ALS.
By this time I got extremely worried, spent large parts of my day surfing the web looking for clues. I wondered if my left leg hadn’t lost volume (comparing the legs, not being sure; maybe the left leg had always been somewhat less voluminous?).
The neurologist then did what I assume is the standard neurological exam. He tested my strength, reflexes, coordination and concluded that everything was normal (no symptoms also that suggest central motor neuron problems). He then ordered my blood tested (no idea what he tested) and an MRI for the painfull spot along my spine. Again the results were ok. An EMG was ordered, to be sure.
Since then fasciculations continued in legs, feet and occasionally also in arms and back and also under my eye and in the mouse of my hands. Also when I walked I noticed that my left foot didn’t behave normally, as if it forgot how to put itself down (but I put this down to being conscious of my walking and therefore intervening with an otherwise automatic process and in doing so onbstructing this proces). Also, when running (my condition didn’t detoriate) I experienced extraordinary fatigue in my shoulders and a feeling as if my throat ‘closed itself’ at the peak of my running (I suppose it could be called a somewhat asthmatic feeling) and also I started waking up as if something got stuck in my throat, during daytime I had to keep swallowing.
Mid december the weakness in my legs had dissapeared (thanks to intense exercise?; I started running four times a week) as had the ‘not being able to walk automatically’-sensation in my left foot’, but fasciculations and throat ‘problems’ continued and now I also noticed that my hands had started trembling (for instance holding a book, reading it) and it appeared that my left hand didn’t behave normally, as if the pink now had it’s own thoughts about what to do (typing lost it’s ‘automatic’ feel,; again: because I start paying attention). No loss of strength was noticible however, so again, as with the ‘walking problem’ I tried to convince myself that by concentrating on the hand I created the sensation of the left hand behaving strangely (for instance: typing).
15 december I had the EMG, in my legs and right arm. The results were clean said the neuro. A fasciculation in my lower leg was observed, but no worrysome clues. He looked at the trembling of my hands and said that it looked like a somewhat heightened tonus. When I told him of the sensations in my throat he didn’t inspect the throat, but said that could be well explained by the fact that in the past I had my bouts with hypochondria (this in the meantime I had confessed to him). No more exams were ordered and of I went. If an EMG is clean, he told me, there is no ALS/PMSA, and that’s it. It’s all in your mind he said (apart form the benign fasciculations)
Now two weeks later. Fasciculations still the same, as is the trembling of my hands (sign of weakness?). The throat problem has become much worse. I experience the feeling that sometimes food is left in my throat after a meal, I sometime have a burning sensation in my mouth (and tongue), the mouth is extremely dry, my voice now and then somewhat hoarsely and when I exercise it is as if my throat closes and I have problems getting the air in. Also now and then I notice that it is as if formulating words is bothersome, as if I have to do an extra effort (again, again; because I now this to be a symptom and therefore start experiencing it?).
All this leaves me with questions. Summed up:
1) Can symptoms of MND develop in such a short time (three months now), and in so many different areas (hand, leg, throat, tongue)?
2) Is it possible that the initial weakness in my legs was a first sign but is now gone only because of exercise?
3) About the EMG; is it possible to have clean EMG and have ALS/PMSA at a stage when fasciculations are already measurable and were observed during the EMG? And now that I experience bulbair symptoms, is it necessary to have a second EMG, just to be sure?
4) How probable is it that all of these sensations (apart from the fasciculations) have their root in anxiety and knowledge about MND symptoms? That they are somehow all stress induced? How can I be sure?
5) Should I check a doctor specialized in the throat/tongue area? Should I insist on a second EMG or is this first EMG a definitive ‘no MND’?
I guess I am not the only one here worrying about having MND (in my case: PMSA). I am frightened, spent much time thinking up worst case scenario’s. Need tranquilizers now and then to fence off the worst fears. Hope some of you find the time to read my (case)story below and possible give some advice/answers to the questions that I have (below). Before you read on, basic stuff that you might want to now: I am 46 years old, married, daughter (12). Normally in good physical shape (running, bike), but with a history of bi-polaire depression II (the mild version) and anxietyproblems linked to hypochondria.
My case:
The problems started in october. First pain in my lower back in the morning and also pain a certain spot in the middle of the spine and a weird feeling at several place in my back and arms, as if someone put a small needle in there. I also experienced moments (hours) of extreme cold. These things annoyed me, but I didn't pay too much attention. Then I found myself having a problem urinating. That is, I had to go the bathroom constantly (as much as 10 times in the morning only, as to before maybe 4 times a day). At the same time I experienced a strange feeling in my underbelly, as if muscles there were constantly twitching. Also: a feeling of fatigue in my legs.
After four weeks I went to my doctor who sent me to a neurologist with the suggestion: ‘myopathie/neuropathie?’
By the time (waiting list) of the appointment (mid november) I already had a new thing: fasciculations in my legs (both sides, upper and lower). This is when I started worrying, went on the internet and found out about ALS.
By this time I got extremely worried, spent large parts of my day surfing the web looking for clues. I wondered if my left leg hadn’t lost volume (comparing the legs, not being sure; maybe the left leg had always been somewhat less voluminous?).
The neurologist then did what I assume is the standard neurological exam. He tested my strength, reflexes, coordination and concluded that everything was normal (no symptoms also that suggest central motor neuron problems). He then ordered my blood tested (no idea what he tested) and an MRI for the painfull spot along my spine. Again the results were ok. An EMG was ordered, to be sure.
Since then fasciculations continued in legs, feet and occasionally also in arms and back and also under my eye and in the mouse of my hands. Also when I walked I noticed that my left foot didn’t behave normally, as if it forgot how to put itself down (but I put this down to being conscious of my walking and therefore intervening with an otherwise automatic process and in doing so onbstructing this proces). Also, when running (my condition didn’t detoriate) I experienced extraordinary fatigue in my shoulders and a feeling as if my throat ‘closed itself’ at the peak of my running (I suppose it could be called a somewhat asthmatic feeling) and also I started waking up as if something got stuck in my throat, during daytime I had to keep swallowing.
Mid december the weakness in my legs had dissapeared (thanks to intense exercise?; I started running four times a week) as had the ‘not being able to walk automatically’-sensation in my left foot’, but fasciculations and throat ‘problems’ continued and now I also noticed that my hands had started trembling (for instance holding a book, reading it) and it appeared that my left hand didn’t behave normally, as if the pink now had it’s own thoughts about what to do (typing lost it’s ‘automatic’ feel,; again: because I start paying attention). No loss of strength was noticible however, so again, as with the ‘walking problem’ I tried to convince myself that by concentrating on the hand I created the sensation of the left hand behaving strangely (for instance: typing).
15 december I had the EMG, in my legs and right arm. The results were clean said the neuro. A fasciculation in my lower leg was observed, but no worrysome clues. He looked at the trembling of my hands and said that it looked like a somewhat heightened tonus. When I told him of the sensations in my throat he didn’t inspect the throat, but said that could be well explained by the fact that in the past I had my bouts with hypochondria (this in the meantime I had confessed to him). No more exams were ordered and of I went. If an EMG is clean, he told me, there is no ALS/PMSA, and that’s it. It’s all in your mind he said (apart form the benign fasciculations)
Now two weeks later. Fasciculations still the same, as is the trembling of my hands (sign of weakness?). The throat problem has become much worse. I experience the feeling that sometimes food is left in my throat after a meal, I sometime have a burning sensation in my mouth (and tongue), the mouth is extremely dry, my voice now and then somewhat hoarsely and when I exercise it is as if my throat closes and I have problems getting the air in. Also now and then I notice that it is as if formulating words is bothersome, as if I have to do an extra effort (again, again; because I now this to be a symptom and therefore start experiencing it?).
All this leaves me with questions. Summed up:
1) Can symptoms of MND develop in such a short time (three months now), and in so many different areas (hand, leg, throat, tongue)?
2) Is it possible that the initial weakness in my legs was a first sign but is now gone only because of exercise?
3) About the EMG; is it possible to have clean EMG and have ALS/PMSA at a stage when fasciculations are already measurable and were observed during the EMG? And now that I experience bulbair symptoms, is it necessary to have a second EMG, just to be sure?
4) How probable is it that all of these sensations (apart from the fasciculations) have their root in anxiety and knowledge about MND symptoms? That they are somehow all stress induced? How can I be sure?
5) Should I check a doctor specialized in the throat/tongue area? Should I insist on a second EMG or is this first EMG a definitive ‘no MND’?
