Giddytown
New member
- Joined
- Jan 5, 2017
- Messages
- 3
- Reason
- Learn about ALS
- Country
- US
- State
- ky
- City
- Walton
Good evening. Against the advice of those close to me, I really needed to do this. Before I begin, I did very closely read the main page on this forum and have very much taken into consideration its instruction. I take this very seriously as far as being a "DIHALS" person but can only think that someone that has firsthand knowledge of this disease would be able to help me figure out what path to take now.
I am a 34 year old Caucasian woman. I have five children with one of my pregnancies being with twins. My mother has been diagnosed with bipolar disorder and depression and my brother severe anxiety. I myself have been told to have had acute anxiety and obviously from my familial history it's very possible that what I am experiencing is simply a very hyperactive imagination coupled with stress and said anxiety. Admitting this, I still felt the need for some clarification.
This past April I visited my GP with complaints of trouble swallowing. Basically this sudden sensation that I was going to choke on my own saliva. This was immediately followed by a severe panic attack, simply because I had this sensation that I was choking for air. In addition I would have off and on this very strange tense feeling around the collar of my neck. I personally at that time thought this was stress induced simply because of some very stressful situations in my life at the time. She prescribed two types of meds and I went on with my life.
Shortly thereafter, I visited my optometrist with what I thought was pink eye but was in fact scleritis. He stressed that I needed to follow up with my GP for blood work to check for an autoimmune disorder as this condition as he said almost always was a symptom of this. She ran some initial tests and didn't find anything strange. I had a second episode of scleritis in my other eye and I followed up again with her for a myriad of other bloodwork testing which again came clean. I've since not had scleritis. Also, my issue with swallowing faded as did the anxiety and the need for the meds (stressful situation resolved).
Now, for about the past two months I have had this onslaught of symptoms. Mainly it has been this awful sensation of not being able to eat. It's not a constant thing. Most of the time I start out just fine. And suddenly I have this sensation that I can't swallow. That I have to focus all of my thoughts on the movement of my throats and the placement of my teeth and food in my mouth before I can swallow. And sometimes it works, sometimes it doesn't and I have to follow a piece of food in my throats with water. I've thus far had no issues with liquids. My tongue feels like it's too large for my mouth. I do have the weird feeling around the collar of my neck again, sometimes feeling as if I can't hold my head up. But this is very random.
Lately when I stand, my legs feel like jelly. As if I'm not going to be able to hold myself up. In addition to these weird things, i get continual twitching. Sometimes my lip. My eye. My chin. In my bottom. My calf muscles. My biceps. I've always had issues with my hands as I type roughly eight hours a day, 5 days a week. But recently I have been dropping things more often. Losing strength in general. But also getting random numbnes in fingertips. As well as burning sensations occasionally.
I do have problems sometimes cognitively. With remembering where things are or having to really think about a word that I want to say but can't say it because I can't think of it. My balance of late has been pretty wonky as well. And to just throw it in there, in my early twenties I did suffer a period in which I would have a few days of severe vertigo. This would come and go.
As I write this, my brain is telling me that there are so many other things that could be causing my symptoms. I know that I currently have a white coating in my mouth and that my issues with swallowing could be something as simple as thrush. I know that with the different symptoms over the course of the past 14 years that a more probable diagnosis is MS. That being said, what has me the most intensely terrified, I mean to the point in which I literally bawl my eyes out in complete fear, is this issue with swallowing. And when I think about it and add in the twitching and the off balance feeling and the perceived tongue twitching (I say perceived because my standing in the mirror looking at my tongue is not a valid in any way test) and feeling like I can't hold my head up.... I obviously feel as if I have bulbar onset als.
I know that only roughly 600 are diagnosed with this per year in the US. I know how rare this disease is in general. I made an appointment with and ENT specialist. To try to rule out (or in) other things such as the thrush or even oral cancer as I am a trying to quit smoker. But I have this constant constant debilitating "knowledge" that the swallowing issues and the twitching are bulbar onset.
I guess why I am here at this point is if anyone is willing, to get a description of bulbar onset. Specifically the swallowing piece. Should I be concerned? Should I go with my brain that says I'm being ridiculous or my gut fear-feeling that says I have als?
I am so sorry to be intrusive. I can only imagine that seeing these sorts of posts probably infuriate. And I truly do, sincerely apologize for that. I'm just at my wits end on this waiting for my doctors appointments to start and literally am so scared that this swallowing issue with the twitching and the weakness .... I just am in my head and don't know what to think anymore.
Thank you in advance for your time.
I am a 34 year old Caucasian woman. I have five children with one of my pregnancies being with twins. My mother has been diagnosed with bipolar disorder and depression and my brother severe anxiety. I myself have been told to have had acute anxiety and obviously from my familial history it's very possible that what I am experiencing is simply a very hyperactive imagination coupled with stress and said anxiety. Admitting this, I still felt the need for some clarification.
This past April I visited my GP with complaints of trouble swallowing. Basically this sudden sensation that I was going to choke on my own saliva. This was immediately followed by a severe panic attack, simply because I had this sensation that I was choking for air. In addition I would have off and on this very strange tense feeling around the collar of my neck. I personally at that time thought this was stress induced simply because of some very stressful situations in my life at the time. She prescribed two types of meds and I went on with my life.
Shortly thereafter, I visited my optometrist with what I thought was pink eye but was in fact scleritis. He stressed that I needed to follow up with my GP for blood work to check for an autoimmune disorder as this condition as he said almost always was a symptom of this. She ran some initial tests and didn't find anything strange. I had a second episode of scleritis in my other eye and I followed up again with her for a myriad of other bloodwork testing which again came clean. I've since not had scleritis. Also, my issue with swallowing faded as did the anxiety and the need for the meds (stressful situation resolved).
Now, for about the past two months I have had this onslaught of symptoms. Mainly it has been this awful sensation of not being able to eat. It's not a constant thing. Most of the time I start out just fine. And suddenly I have this sensation that I can't swallow. That I have to focus all of my thoughts on the movement of my throats and the placement of my teeth and food in my mouth before I can swallow. And sometimes it works, sometimes it doesn't and I have to follow a piece of food in my throats with water. I've thus far had no issues with liquids. My tongue feels like it's too large for my mouth. I do have the weird feeling around the collar of my neck again, sometimes feeling as if I can't hold my head up. But this is very random.
Lately when I stand, my legs feel like jelly. As if I'm not going to be able to hold myself up. In addition to these weird things, i get continual twitching. Sometimes my lip. My eye. My chin. In my bottom. My calf muscles. My biceps. I've always had issues with my hands as I type roughly eight hours a day, 5 days a week. But recently I have been dropping things more often. Losing strength in general. But also getting random numbnes in fingertips. As well as burning sensations occasionally.
I do have problems sometimes cognitively. With remembering where things are or having to really think about a word that I want to say but can't say it because I can't think of it. My balance of late has been pretty wonky as well. And to just throw it in there, in my early twenties I did suffer a period in which I would have a few days of severe vertigo. This would come and go.
As I write this, my brain is telling me that there are so many other things that could be causing my symptoms. I know that I currently have a white coating in my mouth and that my issues with swallowing could be something as simple as thrush. I know that with the different symptoms over the course of the past 14 years that a more probable diagnosis is MS. That being said, what has me the most intensely terrified, I mean to the point in which I literally bawl my eyes out in complete fear, is this issue with swallowing. And when I think about it and add in the twitching and the off balance feeling and the perceived tongue twitching (I say perceived because my standing in the mirror looking at my tongue is not a valid in any way test) and feeling like I can't hold my head up.... I obviously feel as if I have bulbar onset als.
I know that only roughly 600 are diagnosed with this per year in the US. I know how rare this disease is in general. I made an appointment with and ENT specialist. To try to rule out (or in) other things such as the thrush or even oral cancer as I am a trying to quit smoker. But I have this constant constant debilitating "knowledge" that the swallowing issues and the twitching are bulbar onset.
I guess why I am here at this point is if anyone is willing, to get a description of bulbar onset. Specifically the swallowing piece. Should I be concerned? Should I go with my brain that says I'm being ridiculous or my gut fear-feeling that says I have als?
I am so sorry to be intrusive. I can only imagine that seeing these sorts of posts probably infuriate. And I truly do, sincerely apologize for that. I'm just at my wits end on this waiting for my doctors appointments to start and literally am so scared that this swallowing issue with the twitching and the weakness .... I just am in my head and don't know what to think anymore.
Thank you in advance for your time.
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