Hello,
In my previous posts I have indicated that I was tentatively diagnosed with PNH based on symptoms and repetitive nerve stimulation which produced after discharges and cramp potentials. My April Neuromuscular appointment was delayed, since my doctor wants to try out some new test on me that is experimental, but yet to be approved by the hospital.
I have very minor atrophy in my thenar muscles, but have not had any clinical weakness. I had multiple signs of chronic reinnervation, but no signs of active dennervation.
I'm a math professor, so I understand probability and statistics very well, so please don't feel the need to reassure me based on my age (37), etc. I know the odds are extremely low even with cramps and fasciculations. I am not "convinced" that I have or will have ALS. I guess that even the tiny likelihood is enough to raise my anxiety.
The new symptom in question was discovered a few days ago & here's some background. I have 3 small children & when they get a boo-boo or when I want to make them laugh I sometimes make a funny face. I roll my bottom lip over, so that it is inside-out (like I have a big fat bottom lip). Sometimes I'll stick my tongue out like I have a big fat top lip. this is usually good for a laugh out of them. A few days ago, I attempted to make the funny face & was unable to roll my bottom lip over. I have been making this particular funny face since I was very young, so it is a very familiar feeling to make it. I can't remember the last time I made the face, but it was at least a few months, but maybe longer. No matter how much force I exert, the lip will not roll over like it used to on its own. I have to push the lip over with my hand to get it to do what I used to be able to do with just the muscles of my lower lip. My initial thought was, "Wow this is really weird...why can't I make the funny face?" Having done a fair amount of googling, my next thought was, "Crap, is this related to all the other stuff?" I also realized in hindsight that I have had a relatively persistent, tiny little twitch going under my bottom lip for a few months. I have been working on ignoring all my twitches, so I hadn't thought much of it. I'm wondering if this silly face is possibly my first indication of actual weakness. My initial thought was try a bunch of other expressions to see if they "feel" or look different, but now that I suspect an issue I know that everything I do will feel weird... But I can definitely say that not being able to make this face is something new and different from 6 months ago+/- a few months.
Let me qualify that I have not even remotely considered bulbar ALS as a concern. All of my symptoms have been in my arms and legs with some fascics in my lower back. I have not noticed any speech / tongue issues at all (My father has always had a slur in his voice as do I on occasion).
My neurologist told me to tell him if this changes, but still wants to wait until his experimental testing is approved to see me again (probably June). By change, I assume that if this was something sinister it would progress into further weakness.
Based on anybody's experience, should weakness in my lower lip be concerning? Should I push for a sooner appointment? I'm slightly concerned that he wants me to wait because I tested positive for PNH & this further testing is part of his research. I'm very focused on not overreacting. I have a vacation planned to NC OBX next week and I don't want to be a damper on the festivities...
trfogey: Thanks in advance for your eagerly anticipated dose of reality!
Thank you for your time and feedback. It is appreciated.
In my previous posts I have indicated that I was tentatively diagnosed with PNH based on symptoms and repetitive nerve stimulation which produced after discharges and cramp potentials. My April Neuromuscular appointment was delayed, since my doctor wants to try out some new test on me that is experimental, but yet to be approved by the hospital.
I have very minor atrophy in my thenar muscles, but have not had any clinical weakness. I had multiple signs of chronic reinnervation, but no signs of active dennervation.
I'm a math professor, so I understand probability and statistics very well, so please don't feel the need to reassure me based on my age (37), etc. I know the odds are extremely low even with cramps and fasciculations. I am not "convinced" that I have or will have ALS. I guess that even the tiny likelihood is enough to raise my anxiety.
The new symptom in question was discovered a few days ago & here's some background. I have 3 small children & when they get a boo-boo or when I want to make them laugh I sometimes make a funny face. I roll my bottom lip over, so that it is inside-out (like I have a big fat bottom lip). Sometimes I'll stick my tongue out like I have a big fat top lip. this is usually good for a laugh out of them. A few days ago, I attempted to make the funny face & was unable to roll my bottom lip over. I have been making this particular funny face since I was very young, so it is a very familiar feeling to make it. I can't remember the last time I made the face, but it was at least a few months, but maybe longer. No matter how much force I exert, the lip will not roll over like it used to on its own. I have to push the lip over with my hand to get it to do what I used to be able to do with just the muscles of my lower lip. My initial thought was, "Wow this is really weird...why can't I make the funny face?" Having done a fair amount of googling, my next thought was, "Crap, is this related to all the other stuff?" I also realized in hindsight that I have had a relatively persistent, tiny little twitch going under my bottom lip for a few months. I have been working on ignoring all my twitches, so I hadn't thought much of it. I'm wondering if this silly face is possibly my first indication of actual weakness. My initial thought was try a bunch of other expressions to see if they "feel" or look different, but now that I suspect an issue I know that everything I do will feel weird... But I can definitely say that not being able to make this face is something new and different from 6 months ago+/- a few months.
Let me qualify that I have not even remotely considered bulbar ALS as a concern. All of my symptoms have been in my arms and legs with some fascics in my lower back. I have not noticed any speech / tongue issues at all (My father has always had a slur in his voice as do I on occasion).
My neurologist told me to tell him if this changes, but still wants to wait until his experimental testing is approved to see me again (probably June). By change, I assume that if this was something sinister it would progress into further weakness.
Based on anybody's experience, should weakness in my lower lip be concerning? Should I push for a sooner appointment? I'm slightly concerned that he wants me to wait because I tested positive for PNH & this further testing is part of his research. I'm very focused on not overreacting. I have a vacation planned to NC OBX next week and I don't want to be a damper on the festivities...
trfogey: Thanks in advance for your eagerly anticipated dose of reality!
Thank you for your time and feedback. It is appreciated.