Worried53
New member
- Joined
- Mar 6, 2014
- Messages
- 2
- Reason
- Learn about ALS
- Country
- AUS
- State
- Victoria
- City
- Victoria
I'm 53 male and have pretty much stressed myself into a mighty big mess about bulbar fears.
All this started in Dec 2012 with calf cramps and calf twitching. This continued for another month, the cramping stopped but the twitching continued. By about March 2013 the twitching was pretty much all over and I was also getting burning pain in my lower legs and feet.
My doctor thought this might be symptoms of MS so I was referred to a neuro and had spine and brain MRIs which came back negative for MS. My clinical was also fine, this was in May 2013.
The twitching continued and I noticed I was losing weight in my thighs, arms, hands, pretty much all over really. I put this down to stress and high anxiety, especially when I noticed I started to put more weight on across my stomach.
In Aug 2013 I had EEG, NC, and EMG testing. The EMG showed PNH and it was suggested I have BFS, and no signs of MND. The EMG was done on both legs, arms, hands, and my tongue through the chin. I was so relieved when I was told no MND. Clinical at the time was also clear.
However in Dec 2013 I started to have problems dry swallowing, the swallowing had become very tight somewhere in the upper area of my neck. Food would go down fine and swallowing wasn't tight with food or drink, just when I dry swallowed.
Fast forward to now and I still have major problems with what I think feels like very tight neck or swallowing muscles but usually only when I dry swallow. I have however now started to notice that sometimes I have to swallow 2-3 times to get all the food to go down, this is mainly only with dry food though.
What is strange with this though is that if I place my fingers gently on my neck around the adams apple area the tight swallowing sensation doesn't seem to happen. I've also noticed that I seem to be clenching my teeth a little when I dry swallow and that makes it tight everytime. If I dry swallow without my teeth together it usually isn't anywhere near as tight but the dry swallowing feels weird.
I realize that this is often classic anxiety/stress symptoms. My anxiety and stress is pretty bad for over a year now because of the twitching and what to me now looks like all over muscle loss. I guess the stress is doing a number on my weight. My hands are looking atrophied, I have lost significant bulk from the top of both hands (not so much on the palms though) especially between the thumb and index finger and I twitch a lot there. My hands have become very boney and the veins are very prominent, same with both my feet. I've also lost bulk from my thighs and my legs are becoming quite fatigued easily. Have also lost weight in my arms.
I don't seem to have any loss of motor functions other than what has become very tight dry swallowing. I am seeing a psych and counselor for my anxiety which seems to be developing into depression, I am also taking anti anxiety meds (Remeron). I'm trying my best with my mental health which I admit is certainly a problem.
I saw my neuro a couple of weeks ago and told him that three months ago I developed this very tight swallowing sensation. It's not tight where the food goes down, it's just very tight in the neck but only when I swallow. My neuro didn't seem concerned because I can swallow food and drink and my voice isn't slurred. Right now my voice is very hoarse and my mouth and throat are extremely dry. I've had a cold recently so I'm blaming the hoarseness and constant coughing on that.
Does this tight swallowing sound bulbar related? I've also noticed that my twitching has increased and have also been twitching in my face and sometimes in my tongue. My tongue often has some sort of electric burning sensation all down the left side, I've also noticed that the soft palate seems much lower in my mouth that it used to be and doesn't seem to rise much when I say aghhh.
The tight sensation seems to be in the right side of my neck and I've also noticed what I think could be some TMJ type clicking going on in the left side. I pretty much had a meltdown in Dec 2013 and clenched down as hard as I could while wearing my dental splint so maybe I did something to my jaw, smart move not!
If I'm careful with not clenching teeth or pushing my tongue too hard onto my front teeth when I swallow the swallow feels weird and there's throat clicking which I feel and hear in my left ear but it doesn't feel as tight.
Any thoughts appreciated. I'm so scared and stressed and don't really know what to do. My neuro said I don't need another EMG now (had an EMG in Aug 2013 before this swallowing problem). I don't choke or gag on food.
Thanks for reading my rather long first post.
All this started in Dec 2012 with calf cramps and calf twitching. This continued for another month, the cramping stopped but the twitching continued. By about March 2013 the twitching was pretty much all over and I was also getting burning pain in my lower legs and feet.
My doctor thought this might be symptoms of MS so I was referred to a neuro and had spine and brain MRIs which came back negative for MS. My clinical was also fine, this was in May 2013.
The twitching continued and I noticed I was losing weight in my thighs, arms, hands, pretty much all over really. I put this down to stress and high anxiety, especially when I noticed I started to put more weight on across my stomach.
In Aug 2013 I had EEG, NC, and EMG testing. The EMG showed PNH and it was suggested I have BFS, and no signs of MND. The EMG was done on both legs, arms, hands, and my tongue through the chin. I was so relieved when I was told no MND. Clinical at the time was also clear.
However in Dec 2013 I started to have problems dry swallowing, the swallowing had become very tight somewhere in the upper area of my neck. Food would go down fine and swallowing wasn't tight with food or drink, just when I dry swallowed.
Fast forward to now and I still have major problems with what I think feels like very tight neck or swallowing muscles but usually only when I dry swallow. I have however now started to notice that sometimes I have to swallow 2-3 times to get all the food to go down, this is mainly only with dry food though.
What is strange with this though is that if I place my fingers gently on my neck around the adams apple area the tight swallowing sensation doesn't seem to happen. I've also noticed that I seem to be clenching my teeth a little when I dry swallow and that makes it tight everytime. If I dry swallow without my teeth together it usually isn't anywhere near as tight but the dry swallowing feels weird.
I realize that this is often classic anxiety/stress symptoms. My anxiety and stress is pretty bad for over a year now because of the twitching and what to me now looks like all over muscle loss. I guess the stress is doing a number on my weight. My hands are looking atrophied, I have lost significant bulk from the top of both hands (not so much on the palms though) especially between the thumb and index finger and I twitch a lot there. My hands have become very boney and the veins are very prominent, same with both my feet. I've also lost bulk from my thighs and my legs are becoming quite fatigued easily. Have also lost weight in my arms.
I don't seem to have any loss of motor functions other than what has become very tight dry swallowing. I am seeing a psych and counselor for my anxiety which seems to be developing into depression, I am also taking anti anxiety meds (Remeron). I'm trying my best with my mental health which I admit is certainly a problem.
I saw my neuro a couple of weeks ago and told him that three months ago I developed this very tight swallowing sensation. It's not tight where the food goes down, it's just very tight in the neck but only when I swallow. My neuro didn't seem concerned because I can swallow food and drink and my voice isn't slurred. Right now my voice is very hoarse and my mouth and throat are extremely dry. I've had a cold recently so I'm blaming the hoarseness and constant coughing on that.
Does this tight swallowing sound bulbar related? I've also noticed that my twitching has increased and have also been twitching in my face and sometimes in my tongue. My tongue often has some sort of electric burning sensation all down the left side, I've also noticed that the soft palate seems much lower in my mouth that it used to be and doesn't seem to rise much when I say aghhh.
The tight sensation seems to be in the right side of my neck and I've also noticed what I think could be some TMJ type clicking going on in the left side. I pretty much had a meltdown in Dec 2013 and clenched down as hard as I could while wearing my dental splint so maybe I did something to my jaw, smart move not!
If I'm careful with not clenching teeth or pushing my tongue too hard onto my front teeth when I swallow the swallow feels weird and there's throat clicking which I feel and hear in my left ear but it doesn't feel as tight.
Any thoughts appreciated. I'm so scared and stressed and don't really know what to do. My neuro said I don't need another EMG now (had an EMG in Aug 2013 before this swallowing problem). I don't choke or gag on food.
Thanks for reading my rather long first post.