Sue
New member
- Joined
- Sep 11, 2019
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- SV
- State
- SV
- City
- Košice
Hi everyone,
I'm new at this forum and would love to hear your thoughts/advice on my condition. Firstly, excuse my English since I'm not a native speaker.
My biggest issue is my dyspnea while talking/eating/doing some daily activities and of course during exertion. I feel like I need to take a more deep breaths, more often than usual. I have muscle twiches all over my body but mostly on my legs and feet. Today I saw some on my tongue.
I've seen 4 neurologists so far, they did 4 EMGs and Nerve Conduction studies, which showed nothing except for ischemic and hypervetilation tetany. However, during all those EMGs I haven't had any fasciculations in tested muscles /only legs and arms/.
For the last 3 months my FVC lowered from 112% to 108% and now it is 89%. FEV1 is borderline an also MIP/MEP (maximum inspiratory and expiratory pressure) were bad. Pulmonologist found a minor obstruction in peripheral airways and gave me bronchodilator, after few minutes I blew into diffuser and my FEV1, MIP and MEP got better but not enough to be categorized as asthma. Although, I have used bronchodilator at home for some time it didn't help me with my dyspnea. I also gasp for the air during night and have to sleep in an elevated position with two pillows because I it's hard for me to breath in supine position. When I'm in swimming pool and the water is up to my neck, I have a similar problem with breathing.
My heart is fine, blood ok also CK creatine kinase is normal. Neurologist just pumps me up with Magnesium, which is of no help. My muscle fasciculations started 4 months ago in my buttock and after 2 months spread into my both legs, arms, belly, face, eyelids, tongue, neck and I feel my eardrums twiching. Muscle fasciculations are 24/7 mostly in my right foot and calves but sporadic, like I can feel some of them at multiple places simultaneously. My buttock's twiches is sometimes just once a day and my eyelid twiches for few days, then stopped then started again. When I move my muscle, they disappear and when I relax they are back. When I walk a lot they are more pronounced in my legs and fire like crazy.
What also puzzles me is the numbness that comes very quickly if any part of my body is under slight pressure (when I sit on a chair only for half a minute my buttock and both legs go numb - pins and needles sensation/ or when I'm holding my phone in one hand it starts getting numb from my palm upwards). As to the buzzing/vibrating feeling in my legs and hands, this is a new symptoms and my neurologist doesn't know what that could be.
I'm sorry for such a long post and thank you all who will read it until the end. I'm in desperate situation since I have a beautiful 5yo son and it is hard for me to even talk to him, since I need to breath like crazy.
My uncle died of ALS after 11 years of fighting this year in May, and I'm very scared I might have it (we were not blood related) with respiratory onset. I live like I'm somewhere on the other planet, because I can't think of anything else except this disease.
I would really, really appreciate your feedback of there is anyone who can relate to my symptoms.
Thank you
I'm new at this forum and would love to hear your thoughts/advice on my condition. Firstly, excuse my English since I'm not a native speaker.
My biggest issue is my dyspnea while talking/eating/doing some daily activities and of course during exertion. I feel like I need to take a more deep breaths, more often than usual. I have muscle twiches all over my body but mostly on my legs and feet. Today I saw some on my tongue.
I've seen 4 neurologists so far, they did 4 EMGs and Nerve Conduction studies, which showed nothing except for ischemic and hypervetilation tetany. However, during all those EMGs I haven't had any fasciculations in tested muscles /only legs and arms/.
For the last 3 months my FVC lowered from 112% to 108% and now it is 89%. FEV1 is borderline an also MIP/MEP (maximum inspiratory and expiratory pressure) were bad. Pulmonologist found a minor obstruction in peripheral airways and gave me bronchodilator, after few minutes I blew into diffuser and my FEV1, MIP and MEP got better but not enough to be categorized as asthma. Although, I have used bronchodilator at home for some time it didn't help me with my dyspnea. I also gasp for the air during night and have to sleep in an elevated position with two pillows because I it's hard for me to breath in supine position. When I'm in swimming pool and the water is up to my neck, I have a similar problem with breathing.
My heart is fine, blood ok also CK creatine kinase is normal. Neurologist just pumps me up with Magnesium, which is of no help. My muscle fasciculations started 4 months ago in my buttock and after 2 months spread into my both legs, arms, belly, face, eyelids, tongue, neck and I feel my eardrums twiching. Muscle fasciculations are 24/7 mostly in my right foot and calves but sporadic, like I can feel some of them at multiple places simultaneously. My buttock's twiches is sometimes just once a day and my eyelid twiches for few days, then stopped then started again. When I move my muscle, they disappear and when I relax they are back. When I walk a lot they are more pronounced in my legs and fire like crazy.
What also puzzles me is the numbness that comes very quickly if any part of my body is under slight pressure (when I sit on a chair only for half a minute my buttock and both legs go numb - pins and needles sensation/ or when I'm holding my phone in one hand it starts getting numb from my palm upwards). As to the buzzing/vibrating feeling in my legs and hands, this is a new symptoms and my neurologist doesn't know what that could be.
I'm sorry for such a long post and thank you all who will read it until the end. I'm in desperate situation since I have a beautiful 5yo son and it is hard for me to even talk to him, since I need to breath like crazy.
My uncle died of ALS after 11 years of fighting this year in May, and I'm very scared I might have it (we were not blood related) with respiratory onset. I live like I'm somewhere on the other planet, because I can't think of anything else except this disease.
I would really, really appreciate your feedback of there is anyone who can relate to my symptoms.
Thank you
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