spacecowboy000
New member
- Joined
- Apr 16, 2018
- Messages
- 7
- Reason
- Learn about ALS
- Country
- US
- State
- Texas
- City
- Houston
Hello everyone...I hope everyone is having a good Christmas season. I wish I could say the same.
It's been almost 6 months since I have been here. Some things have gotten better and some a lot worse/terrifying. I was hoping to never have to come back here but my situation has dictated I do.
Over the last four to five weeks I have been having what I thought were sinus issues. Having mucus in my nose as I ate and drank. Post nasal drip and a reddening throat. I thought nothing of it. The last 2 or 3 weeks I have been starting to feel like there is pressure behind my nose whenever I eat or drink. Like something wants to go up my nose. I feel occasional burning. I have had pain behind my eyes and in my ears but I still was attributing to sinus.
I went to go see my ENT a week ago and as I describe the symptoms the first thing he said was soft palate weakness/nasal pharynx reflux. Told me to go back to my neurologist. I told my ENT I had just had a follow up with my neuro a few days before and I was given the all clear. Though at that visit all my neuro did was have me stick my tongue out and watch it at rest. My ENT then ignored all the other symptoms I said and told me to go back to her/give her a call. I asked the ENT to scope me and he refused. I called my neurologist back and she told me she has never seen any clinical evidence of soft palate weakness and asked what the ENT said when he looked....The ENT said it looked fine but that you can't always tell by looking. My neurologist told me that the ENT was throwing out a red herring and not to worry that I still don't have ALS. I also went to an urgent care doc and they also said my palate looks strong.
Though over the last few days I have noticed once or twice what I think are drops of liquid i have drank come out of my nose. Which would indicate palate weakness. I even felt one nostril pop open and I thought i felt something go through. Each of those incidents I put it into tissue and it looked like what I had ate/drank. My gf and family dispute that though cause it doesn't happen when I try to do it in front of them. They have had me drink against gravity and put tissue in my nose. I have done so many times without choking and without evidence of leaking into the nose. So they don't believe it. Reminding me ALS doesn't come and go.
Also over the last 2 to 3 weeks swallowing has becoming more difficult. I get fatigued while eating and drinking. Sometimes taking a long time to finish my food or beverage. Then when I do I feel drained and tired. Some days have been better than others. This past friday I had difficulty initiating a swallow and had to take 2 swallows at a time just to eat mashed potatoes. As I type this I just finished lunch. A double meat burger which took me 22 mins to eat and I had to pause 3 times eating cause I got tired/muscles sore at the bottom of my throat. I didn't have the difficulty I had friday but I still feel/worry its progressing.
My tongue has been also getting more fatigued and sore lately. The twitches I have on my tongue come and go. I can also feel them as it feels like a pulling or like my tongue is full of electricity. I can still move it but it takes more effort and doesn't not feel nearly as fast/strong as it used to.
I have not choked on liquid constantly and my speech is not slurred/hypernasal, I know these are the original/main bulbar onset symptoms but i don't know who/what to believe. The neuro who is my second ive seen this year to tell me I don't have ALS or the ENT who told me I have palate weakness without any real evidence minus my symptoms/what I told him? Does any of this warrant my anxiety or am I freaking out over nothing?
I am scared cause my gf and I are talking about marriage.......I don't want to burden her with this if I do have it. I hope to hear from you guys soon.
It's been almost 6 months since I have been here. Some things have gotten better and some a lot worse/terrifying. I was hoping to never have to come back here but my situation has dictated I do.
Over the last four to five weeks I have been having what I thought were sinus issues. Having mucus in my nose as I ate and drank. Post nasal drip and a reddening throat. I thought nothing of it. The last 2 or 3 weeks I have been starting to feel like there is pressure behind my nose whenever I eat or drink. Like something wants to go up my nose. I feel occasional burning. I have had pain behind my eyes and in my ears but I still was attributing to sinus.
I went to go see my ENT a week ago and as I describe the symptoms the first thing he said was soft palate weakness/nasal pharynx reflux. Told me to go back to my neurologist. I told my ENT I had just had a follow up with my neuro a few days before and I was given the all clear. Though at that visit all my neuro did was have me stick my tongue out and watch it at rest. My ENT then ignored all the other symptoms I said and told me to go back to her/give her a call. I asked the ENT to scope me and he refused. I called my neurologist back and she told me she has never seen any clinical evidence of soft palate weakness and asked what the ENT said when he looked....The ENT said it looked fine but that you can't always tell by looking. My neurologist told me that the ENT was throwing out a red herring and not to worry that I still don't have ALS. I also went to an urgent care doc and they also said my palate looks strong.
Though over the last few days I have noticed once or twice what I think are drops of liquid i have drank come out of my nose. Which would indicate palate weakness. I even felt one nostril pop open and I thought i felt something go through. Each of those incidents I put it into tissue and it looked like what I had ate/drank. My gf and family dispute that though cause it doesn't happen when I try to do it in front of them. They have had me drink against gravity and put tissue in my nose. I have done so many times without choking and without evidence of leaking into the nose. So they don't believe it. Reminding me ALS doesn't come and go.
Also over the last 2 to 3 weeks swallowing has becoming more difficult. I get fatigued while eating and drinking. Sometimes taking a long time to finish my food or beverage. Then when I do I feel drained and tired. Some days have been better than others. This past friday I had difficulty initiating a swallow and had to take 2 swallows at a time just to eat mashed potatoes. As I type this I just finished lunch. A double meat burger which took me 22 mins to eat and I had to pause 3 times eating cause I got tired/muscles sore at the bottom of my throat. I didn't have the difficulty I had friday but I still feel/worry its progressing.
My tongue has been also getting more fatigued and sore lately. The twitches I have on my tongue come and go. I can also feel them as it feels like a pulling or like my tongue is full of electricity. I can still move it but it takes more effort and doesn't not feel nearly as fast/strong as it used to.
I have not choked on liquid constantly and my speech is not slurred/hypernasal, I know these are the original/main bulbar onset symptoms but i don't know who/what to believe. The neuro who is my second ive seen this year to tell me I don't have ALS or the ENT who told me I have palate weakness without any real evidence minus my symptoms/what I told him? Does any of this warrant my anxiety or am I freaking out over nothing?
I am scared cause my gf and I are talking about marriage.......I don't want to burden her with this if I do have it. I hope to hear from you guys soon.
