jm5834
Member
- Joined
- Apr 15, 2019
- Messages
- 12
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- VA
- City
- Lynchburg
Hello all. I posted a thread here back in the spring about my near constant diffuse fasciculations which I know mean nothing but it's the new symptoms bothering me.They started in mid February and have been hanging around since (the fasciculationsthat is.) I've had periods where they seem to calm a quite a bit almost to a halt at one point, but they are present daily.For a little background I turned 28 in September and will admit that I have struggled with bouts of health anxiety throughout my life. And I must admit that about a week before this all began i did see a documentary about young ALS patients that sparked a fear in me. Unfortunately I believe in telling my neurologist this in the beginning she has written me off as nothing but a case of health anxiety. I get that. But she still refuses me an EMG and 2 weeks ago dismissed me after a brief not even 1 minute clinical exam.I just feel it's what I need for peace of mind. Well that's neither here nor there, I want to give a list of my symptoms as of late
I know no one can diagnose me and I have read the stickies and understand, I just cant get in with another neurologist at the moment, and am looking for some opinions from people who understand the nature of the disease
-Intermittent hoarse voice
- Dysphagia( specifically oropharyngeal dysphagia)
Now this hasn't been diagnosed by a doctor but it started happening last week. When I try to drink liquids it's as if they go into my nose or behind it. Everytime. Now I must say that I did stick a piece of toilet paper in my nostrils to test and I didnt see any actually coming into the nasal cavity from that, but it's as if I can feel it staying behind my nose. Hard to explain.
-Wheezing which I have had for quite a while so maybe unimportant
-When I lay down on my back it sometimes feels as if I choke on my spit
-More frequent twitching confined to my trunk(stomach) , arms, shoulders, neck, and eyelid. May have felt some in my tongue but I know they say you cant feel them so not sure.
- A decrease in motor skills like typing on my phone. Maybe an action tremor?
- Stiff crampy feelings in fingers and hands at times
- Slowed finger tapping
-Weak feelings (which I know aren't a symptom) but they are hard to explain. Almost fluttery feelings in muscles.
- Hands go numb often while sleeping
- Possibly mild weakness in left hand and arm. Not clinical yet but definitely feels slightly weaker
-Waking up frequently at night
- Trouble emptying bladder
I'm trying not to get worried again like I did before but these symptoms seem more organic, because I've been on anti anxiety and was feeling much better mentally. I had let go of my worry but then these symptoms started to show up in about September. I feel like my strength is still pretty good mostly, and I can still play guitar fine, sing , talk, workout. But my specific concerns given my symptoms are bulbar onset. Which to my understanding wouldn't necessarily show weakness in the body yet. I will say I haven't had anyone tell me I'm slurring at all, and I can sing normal, and also blow out a candle with no air escaping through my nose that I can detect. I apologize if my post is offensive or inappropriate, truly. I just dont know where to turn at the moment as I'm in limbo of finding another neurologist to see.
I know no one can diagnose me and I have read the stickies and understand, I just cant get in with another neurologist at the moment, and am looking for some opinions from people who understand the nature of the disease
-Intermittent hoarse voice
- Dysphagia( specifically oropharyngeal dysphagia)
Now this hasn't been diagnosed by a doctor but it started happening last week. When I try to drink liquids it's as if they go into my nose or behind it. Everytime. Now I must say that I did stick a piece of toilet paper in my nostrils to test and I didnt see any actually coming into the nasal cavity from that, but it's as if I can feel it staying behind my nose. Hard to explain.
-Wheezing which I have had for quite a while so maybe unimportant
-When I lay down on my back it sometimes feels as if I choke on my spit
-More frequent twitching confined to my trunk(stomach) , arms, shoulders, neck, and eyelid. May have felt some in my tongue but I know they say you cant feel them so not sure.
- A decrease in motor skills like typing on my phone. Maybe an action tremor?
- Stiff crampy feelings in fingers and hands at times
- Slowed finger tapping
-Weak feelings (which I know aren't a symptom) but they are hard to explain. Almost fluttery feelings in muscles.
- Hands go numb often while sleeping
- Possibly mild weakness in left hand and arm. Not clinical yet but definitely feels slightly weaker
-Waking up frequently at night
- Trouble emptying bladder
I'm trying not to get worried again like I did before but these symptoms seem more organic, because I've been on anti anxiety and was feeling much better mentally. I had let go of my worry but then these symptoms started to show up in about September. I feel like my strength is still pretty good mostly, and I can still play guitar fine, sing , talk, workout. But my specific concerns given my symptoms are bulbar onset. Which to my understanding wouldn't necessarily show weakness in the body yet. I will say I haven't had anyone tell me I'm slurring at all, and I can sing normal, and also blow out a candle with no air escaping through my nose that I can detect. I apologize if my post is offensive or inappropriate, truly. I just dont know where to turn at the moment as I'm in limbo of finding another neurologist to see.
