Worried about als or bulbar

Status
Not open for further replies.

W3sweat

New member
Joined
Mar 18, 2022
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
UT
City
Syracuse
Hi everyone.. first I want to say I have read all the posting instructions.. and also I want to say I’m so so sorry to everyone who is going through this or has lost a love one to this.

I am a mom of two.. 32 years old.. a little bit about my history.. had covid in September.. in October I woke up with burning and tingling through out my body.. ( I know this points away from ***) had that happen for a few days.. then again in January I had it happen again.. this time my legs just felt jello and weak.. I just felt off.. let me also throw in I have breast implants and I know those can make you sick.. so anyways I started worrying about ms…

then in February, February 17th to be exact I started have twitching all over my body.. I was an idiot and googled.. and you know what I came across.. I started reading that, watching ppls stories on YouTube, and reading all these forums.. learned way too much about it.

I’ve also lately when I’m sleeping and start to have really bad anxiety I like have a weird swallowing thing that keeps me up. I don’t know how to explain it.. I went to a neurologist marCh 25th and he checked my reflexes.. I told him I worried about bulbar too cuz when I stick my tongue out it does twitch here and there.. all he did was check my tongue for like 3 seconds.. my reflexes were great.. he told me for my peace of mind cuz he could tell how worried I was to come back for a emg cuz he can’t ever say 100 percent it’s not als without one.. and he could tell I wanted one and needed one for peace of mind.

Came back March 28th he just tested my right leg and left arm.. he said he saw nothing.. ( at my two appointments I didn’t twitch once of course) it’s more at night or when at rest.. so he told me to not worry about als that that is done with.. i asked if he thought I could have bfs.. and he said I don’t even think it’s that. Prob anxiety.. yes my anxiety is through the roof I’ve never been like this..

I have jolting.. my lips will twitch.. or like jerk I don’t know how to explain.. sometimes will get some in my neck..my twitching has subsided a little bit.. but now is more upper.. but will sometimes have a couple twitches in feet or one in leg.. but are so settle that it scares me cuz they use to be intense.

I also forgot to say my leg and arms will sometimes fall asleep at night.. then yesterday I was yawning a lot a lot and that scared me cuz of what I’ve read.. I’ve just read way too much.. sorry this is so long. And thanks for taking time to read it..

so my question is.. should I go get reevaluated? I’m nervous maybe I could have upper? I don’t have slurring or anyhing. I stutter sometimes.. I know I’m just so worried.. this legit is all I think about when I wake up in morning until I go to bed. It’s taking over my life. I sit and watch my tongue.. it’s just awful.. i am present in my kids life but not cuz I’m so worried.. also I’m always cold.. i think my circulation is horrible but don’t know if that has anything to do with it…Just am worried cuz I use to have twitching all over now it’s kinda just settled into my upper but will occasionally have some bottom twitching. And the swallowing when I trying to go back to sleep that keeps me up.. but it’s not like choking I don’t know how to explain this.. but I notice this happens when my anxiety is high.. cuz I’m able to go to bed at night and it doesn’t happen..

I also forgot to mention I do get some cramping it my feet and calves here and there.. anyways I’m so sorry this is so long and so back and forth. And the yawning thing really scared me how much I did it yesterday. But I don’t know if it’s cuz I’m having anxiety or can’t breathe.. or what’s going on. Again I’m sorry for this chaotic thread.. Happy Easter everyone! You are loved ❤️

I also forgot to mention I have cramping in calves and feet sometimes.. and I have aches and pains in arms, joints etc.. I know this points away from it.. but I wanted to give all detail.. again my heart goes out to you guys who are going through this ❤️
 
Last edited by a moderator:

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
847
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
BW
City
Stuttgart
Whoah, take a deep breath! Exhaaaale.

As you said yourself your anxiety is through the roof, it really seeps out of this post. Please seek professional help for it and do anything that relaxed you. Move your body, let it work for some peace of mind.

Try to stay away from Dr Google and forums like this. You already went down the rabbit hole to the extend where you had an EMG performed. The doc cleared you, congratulations! Even with just the two limbs and no twitching during the exam you can take that to the bank. You symptoms neither sound, nor look, nor smell like ALS.

All the best for treating your anxiety! This is no small business, you and your mental health deserve full attention.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,270
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm sorry you are going through this, and I can see your anxiety and all these things happening.
I truly suggest you read the following post again.
No matter how scary, twitching, jolts, cramping, aching etc all mean nothing at all concerning ALS.

Please do go back to your doctor and talk really honestly about these symptoms, but without asking about ALS - ask what they think is going on and what path you should be on for reducing these things. Then follow those instructions - honestly your doctor understands how to examine you and what these things all mean. I with you the best, this anxiety is far more treatable than it feels, I promise.
 

W3sweat

New member
Joined
Mar 18, 2022
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
UT
City
Syracuse
I appreciate you replying back to me.. also I wanted to say I’m so sorry for your loss.. my heart goes out to you.. I get emotional writing this cuz my heart truly breaks for anyone who has or is going through this..

First I wanted to point out I did read the sticky a couple more times… like I said in my original post I googled, watched YouTube visors of ppls stories and also this forum.. some ppl said they did start out with twitching.. but I guess that is rare?? I did have a emg like I said.. only had twitching for about 5 weeks when I had it done and on two limbs.. so I hope that was enough..

Are you saying in your reply that you think all these symptoms going on with me are from my anxiety?? I just don’t understand how all these weird symptoms can manifest and cause me these issues from anxiety.. or are you saying go back to doctor cuz I could have something else going on? I just truly hope my neurologist did telhe clinical exam right.. cuz all I can remember is him having me touch my nose, reflexes, abs strength test, and having me follow his hand with my eyes.. And looked at my tongue for like two seconds.. no mri was done or anything.. I told him I was worried about bulbar cuz I do have random tongue twitching here abs there when sticking out tongue, and sometimes at rest.. also I have tongue pain?? And I feel like someone is choking me at times? But could this all really be from anxiety. My twitching has came back full force.. but then at times I will have the ones I can’t really feel and that scares me and I’ll have them sometimes when I’m moving and that scares me too.. I’m just scared.

I’m scared to go on anxiety medicine.. what if it makes my twitching worse.. but maybe I need to have another real talk with my doctor.. I just went straight to a neurologist.. and all he said after emg was he saw nothing..

I just get scared cuz yes the twitching, feet and leg cramps here and there, jolting, pains, and the random tongue twitches.. and like I said in original post sometimes trying to go back to sleep the swallow thing will keep me up.. also will have twitching in tongue in one spot for a couple seconds.. I just have read way too much.. and like you said you can tell my anxiety is bad. It is. And I hate it.. I don’t know what to do or if I should have more testing done.. or if this really just from anxiety.. which I can’t understand how my body can do these things if it is..

Again I appreciate you replying. I don’t have anyone to talk to about these things. It’s bottled up inside me.. I did start therapy.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,877
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi there-

It's super clear you are VERY anxious about your health. This forum can only provide you the most basic of information about ALS (most contained in the "Read Before" link). It is standard for us to recommend you go back to the doctor if you continue to be worried about your health. Because you are anxious, you are reading way more into that recommendation than is meant. You have been cleared by a neurologist of ALS and the members of this forum would not contradict that.

While your symptoms must be worrying to you, they do not seem to follow the pattern that indicates ALS. What they might mean is up to your doctor and yourself to work out. We simply can't provide that kind of medical advice or assistance here. It is very good you are seeking therapy while you search. Your statement that you have no one to talk to about your worries seems strange, as you are speaking with a therapist! If you are looking for a more peer based support system, there are many different groups online- No More Panic is a good forum. r/MuscleTwitch on reddit is good too. Face Book also has a variety of support and discussion groups as well.

You admit this forum is not good for your anxiety. Maybe ask your therapist what some good tools might be to help you with your desire to post and search here despite knowing that.

Please take care
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,270
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
We are not doctors.
We know ALS really well and we can see that what you report is NOT ALS.
We can see you are very anxious.
That does not mean we have now diagnosed you and said everything is anxiety.
You really must go back to your doctor and discuss this fully and openly as they can see you, examine you, run tests, and start a path for you whatever that is.
Doing all this here with all this text is going to get you nowhere but more anxious.
I truly wish you the best.
 

Clearwater AL

Very helpful member
Forum Supporter
Joined
Aug 28, 2013
Messages
2,293
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Get Real
Many people with Health Anxiety are often unable to function or
enjoy life due to their fears and preoccupations. They become
preoccupied with bodily functions, breathing, heartbeat, minor
physical abnormalities, dents, fasciculation, physical sensations,
pain, pins and needle feelings, perceived weakness, sleep disorders
and continuing new symptoms. This often effects those close to
them... spouse, children and friends. Worse is when that person
is in denial about their Health Anxiety.

Then to amplify, escalate and add more to it… Dr. Google.
 

W3sweat

New member
Joined
Mar 18, 2022
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
UT
City
Syracuse
Hi everyone.. I went to the doctor on Friday.. I told him about all what’s going on… he looked at my blood work that I had done in January..( this is before my twitching and stuff started) and said they didn’t run my thyroid.. ( I’m on np thyroid medication) so he just wanted to run my thyroid, iron, b12, a sugar test, and I believe b12. 🤷🏽‍♀️

I will be going on Monday or Tuesday to get that blood work done.. i told him about the swallowing thing that sometimes keeps me up.. he says if that doesn’t go away in awhile.. might want to go to a emt i believe that’s what it’s called for a camera to put down my throat? Question is what would that be for? Also I only notice this weird swallowing thing go on in the morning when I’m trying to go back to sleep and I start worrying.. I forgot to mention every morning I feel like I need to puke when I wake up..

The last couple of days I feel like my voice has been a little bit scratchy.. sometimes when talking I have a weird sensation and like have to stop talking or cough.. and sometimes I feel like my throat is tight.. and I sometimes can have tongue pain.. not all the time.. but I’ve read all these things can be anxiety related 🤷🏽‍♀️ So my question is.. do any of these things sound bulbar related? I know all you have said no.. and like you all said I’m worrying and anxiety is high..

This is why I went to the doctor to tell him my symptoms or if it’s just anxiety.. he wanted to run a couple blood test.. then go from there.. If all those came back normal.. he thinks it could be anxiety.. I’m doing all I can to figure out what is going on.. and I apologize for being annoying. Just this throat stuff has me worried.. I sometimes have a sore throat.. ( I know that’s not a symptom) and can have mucus.. I do not feel sick.. but the swallowing and tight throat make me worried.. anyways thank you for taking time to read this.. I appreciate it.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,270
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Sounds like he is pursuing this logically - check bloods, then get someone whose specialty is in the throat area check for abnormalities. That all makes sense, let them do their work and let us know when you have a diagnosis.
 

W3sweat

New member
Joined
Mar 18, 2022
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
UT
City
Syracuse
Wait are you saying it could be bulbar? Does it sound like that? I asked if he was concerned about that.. at the end when he said check throat.. but he said he wasn’t worried about that 🤷🏽‍♀️
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,877
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
No, that is not at all what she is saying. Please visit with your doctor to ask your questions. We can only provide basic information about ALS and can not provide you the kind of broader diagnostic advice you are asking for. Your doctor has cleared you, the people here have also tried to provide reassurance, but you are reading into the answers and thinking people are telling you something they are not.

I will be closing this thread and request you do not open another, as your questions are better directed to your medical care providers. Please take care.
 
Status
Not open for further replies.
Top