Status
Not open for further replies.

Riggz10

Active member
Joined
Apr 21, 2015
Messages
31
Reason
Learn about ALS
Country
US
State
New York
City
Rockaway
Hi everyone - I am reluctantly posting again after doing my best to stay away from this website. I stayed away for the most part since my last thread but have glanced every now and then. I am back to say that I know not all is well. I am twitching everywhere and my symptoms regarding bulbar issues are really scaring me. I am going through another bout of having to clear my throat constantly. Lots of saliva having to be spit out all the time. Jumbling words constantly. I answer phones at work. When I answer them . I have to pause and think for a second - and then speak. I know this isn't normal. My strong voice is so scratchy and nasal and I slur numerous words from time to time. Since all of this started, I am not going through my third round of TMJ. Does that happen to people with this disease. It is so painful and annoying. The doctor told me that this VERY RARELY ever happens to a person this often in such a little amount of time. So I wondered if this is just another thing that might stop working soon? I always read the bulbar experts on this site say that if you can stick your tongue out and move it side to side and up and down that nothing is wrong. Now I can barely move my tongue because of this third bout with TMJ. But is this TMJ or is something wrong neurologically? All of these bulbar issue added with the fact that I haven't been able to breathe right for over two years is really scary. I am out of breath all of the time for no reason. This with all of my weakness in my right hand and right foot (using the pedal while driving) is getting scary. My legs are always in pain and are stiff and achy and twitching all the time. My handwriting is a joke now. So many other things but I don't wanna bore you. My fiance doesn't want me to go back to the doctor b/c she thinks it's waste of time but I am not right. I know something is wrong. You've seen my old threads - any advice?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,772
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Did you do the things you said were going to do last time? What happened?
 

Riggz10

Active member
Joined
Apr 21, 2015
Messages
31
Reason
Learn about ALS
Country
US
State
New York
City
Rockaway
Hi Nikki and thanks for chiming in as always. I went to the psychologist for a few months who kept in touch with most trusted neuro who assured him many times there is no way I could have ALS even though I haven't seen my neuro in months. My fiancé doesn't want me to go see him but I think I need to. I just keep getting worse - typing this on my phone is so hard. So many things are hard. Is this TMJ thing a neurological thing? My primary doctor says it shouldn't happen this often. Am I losing my face? Please advise.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,772
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
You were going to ask your neuro to send you to an ALS specialist or explain why it was not appropriate. You were going to ask for a functional medicine consult.

My family did not have tmj, intermittent or otherwise, as part of their bulbar presentations.

If you have new symptoms see the doctor. If your symptoms are so severe your partner should be noticing them
 

Riggz10

Active member
Joined
Apr 21, 2015
Messages
31
Reason
Learn about ALS
Country
US
State
New York
City
Rockaway
Long weekend. Thank you for another reply Nikki. I have not told my neuro the things you told me to because I haven't seen him. I went to the psych for about two months and he was in contact with my neuro who assured him that I could not have this. With all the issues I have, I keep avoiding making another appointment because my fiance doesn't want me to go through this anymore.

I just have so many problems speaking, breathing, excess saliva, clearing my throat, using my right hand, my heavy painful legs, my right foot while driving, and this TMJ stuff has me scared to top it all off. It's scaring me b/c I can't move my tongue - and the administrators stress that not moving the tongue is a big deal. I still can but I dunno if my jaw is kind of like dying out on me?

And the twitching is relentless Nikki. If I make this appointment I wonder if I should stress an EMG of my tongue because of all of these bulbar issues. My throat is just scratchy and hoarse and quite frankly, having to clear my throat and spit out huge wads of saliva almost every few minutes is getting annoying. When people ask me questions at work or when I answer the phone - there is always a pause before I can get my words out. It's a battle to enunciate.

Waking up a lot in middle of the night not being able to breathe. Walking upstairs and not being able to breathe along with the pains in legs make stairs awful. I am not diagnosed with anything - but I guess making another appointment with him is necessary? Talk to him about whether or not a referral to an ALS specialist is relevant? I have been avoiding this because I am getting married in 3 months. I am scared and don't want this to ruin my fiance's life. I am more worried for her than I am for me. She doesn't deserve this. I have just been not OK for almost two years now. My body doesn't let me do things I used to do. What else can this be?
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,334
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Your posts are not quite adding up for me, and certainly are not suggesting ALS. If you "could barely move" your tongue, you would not be able to speak or eat. I note that you were recommended a BiPAP, vitamin D and a RDA-level B complex in previous threads. Did these happen? Obviously poor breathing would be responsive to a properly-titrated BiPAP. With recurrent TMJ flareups, a night guard is also recommended. Are you using one?

If I understand correctly, you've had at least five normal EMGs over a couple of years. Pursuing ALS doesn't seem like a productive path. If you search these threads, you will find many suggestions for symptom relief, including the previous ones I mentioned, and that seems like the path to take pending new evidence of a treatable neurologic or systemic disorder. I don't think there's any more we can do for you beyond these suggestions, and you are the one who has to implement them, to move toward the long and happy life for which you and your fiancée hope.

Best,
Laurie
 
Last edited:

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,775
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
If you have TMJ disorder, it is structural, not neurological. I had my TMJ dislocated in a car accident in 2000 and it caused a lot of issues, including numbness, pain, dizziness, and the inability to open and close properly. My jaw also got tired. It was 100% structural and came and went for many years.

If you've had clean EMGs there is no reason to ask for another. If you have sleep apnea, you should use your machine. If you are overweight, lose the weight and you'll breathe better.

You can get a custom night guard if your TMJ disorder is that bad.
 

Riggz10

Active member
Joined
Apr 21, 2015
Messages
31
Reason
Learn about ALS
Country
US
State
New York
City
Rockaway
May I ask about foot drop? My right foot is so heavy - it's just getting to be so bad? I am just so weak in my legs and I cannot run. I just read the story of the NFL player Dwight Clark who was just diagnosed. It started with his hand but he told his neuros that he can't run. Pete Frates told his doctor that he couldn't run. It was then that they started to dig deep into the situation. I told my neuro and she couldn't fathom how someone my age couldn't run.

I also just read a new comment on this site by GLNewcomer talking about fitness routines getting stronger or digressing? I cannot do any of the stuff I used to do and I am only 32. I was a division 1 athlete who cannot run more than 5 steps nor run up stairs or use my hands properly on a bat of or golf club.

And worst of all I cannot breathe for the past year or so or use my strong voice anymore b/c I'm always clearing my throat and spitting out saliva.

I'm getting married in mid-June so I'm just trying doing my best to be strong for my lady. She thinks I'm fine because of all of my tests were good and my neuros said no way. Yet I still haven't been to an ALS center b/c doctors don't think I have it so they haven't sent me. I'm in such a place of hopelessness right now because why else would I have all of these weaknesses and twitching?

Everyone in limbo, I feel for you. For all of you who help us - Thank you.

Would love to hear from anyone who wants to chime in.
 

Lixen

Active member
Joined
Dec 3, 2014
Messages
93
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
SC
City
Greenville
I just. I just can't believe you're still here.
 

starente15

Senior member
Joined
Oct 27, 2014
Messages
807
Reason
Lost a loved one
Diagnosis
10/2017
Country
US
State
NJ
City
Northern
I think everyone has chimed in with their feedback and there's some follow up required on your end to get to the bottom of things that aren't related to ALS.
 
Status
Not open for further replies.
Top