bulbar onset and dyspnea

[Hans]

Hello everyone here,

I have some questions concerning bulbar onset which I hope someone will provide an answer to.

Has anyone ever experienced (or has heard about) bulbar onset and dyspnea (not at night, but at daytime, when exercising but also sitting still, all the time really) almost from the start of the first symptoms of bulbar onset (percieved speechproblems)

Does stumbling over words, stuttering; problems with words like 'problem' - the 'l' and the 'd' at the beginning of sentences) read as common first symptoms of bulbar ALS.

Is it always weakness of diaphragma that causes dyspnea in ALS or can dyspnea with bulbar onset also be caused by something else (weakening of the soft palate or epiglottis or tongue)?

Is it common (or known) that bulbar onset is accompanied by widespread fasciculations (legs, shoulder, eyelid, hands, around the backbone)?

Does a clean EMG of the legs and arms rule out ALS when the onset is bulbar?

Sorry for tha many questions and thanks in advance,

Hans (a guy with a past in which hypochondria frequently surfaced)

 

[trfogey]

Before I start answering these questions, I have some questions for you. Why are you asking these questions? Who is the person who has these symptoms? Has the person who has these symptoms seen a doctor and what did that doctor tell them?

 

[Hans]

It's me. What is describe is what I'm experiencing. I have seen a neuro some months ago. Back then there was only the twitching in my legs. EMG of the legs came out clean. Dyspnea and speech difficulty surfaced afterwards.

 

[pudge44]

My husband has bulbar als, he has twitching in legs ( mostly) way before his speech was affected he does have breathing issues, you should wait till you see a neurologist as ALS takes a while to pin point sometimes, I hope you do NOT have ALS.

 

[pjm220]

I have bulbar ALS. My speech began to slur first. The "twitching" didn't start until later. However, those 2 symptoms are not ALS exclusive. Work with your doctor and believe what s/he says. Good luck to you.

 

[mhswarriors]

Look at the wikipedia definition of dyspnea. It list a whole host of causes none of which are ALS. One is Phsycogenic. Which means it is caused by your mind not a physical problem. Also don't read into what other posts as you are not getting full information. While at first glance pudge44 says her husband had fasics mainly in his legs way before slurring. What you are missing is that in a previous post pudge44 says that when they went to the doctor he was not able to stand on his toes. This would be failing part of the clinical exam. He also had showed many other signs from his first exam. Notice what I am doing here. I am talking about a doctor visit. No one here is a doctor and we can't diagnose you. Go to a neuro if you haven't already, and get tested if you are worried. I have bfs. It causes widespread random twitching, but nothing else. My clinical exam was totally clean, and I never even had an EMG or a NCV. You must have weakness to have ALS. I have been twitching for 10 months. Hasn't slowed me down one bit. I would bet you have the same thing.

 

[Hans]

I don't have any signs of weakness in arms and legs. What worries me is the combination of fasciculations, dyspnea and stumbling over words and letters. I did go to the neuro back in november because of the twitches and a weak feelings in my legs. He did an EMG of the legs (mid december), which came out clean. BFS probably, he said, when other symptoms surface, come back. Since then the weakness in the legs disappeared, funny feeling in the little finger in the left hand surfaced (as if it suddenly had a mind of its own), then disappeared, then I started having problems swallowing (as if small pieces of food stayed behind in my throat, then that disappeared also, and since januari dyspnea surfaced (first while exercising, then all the time), along with this strange feeling in my tongue (as if it's stuck, constrained) and the stumbling over letters words (mainly the 'l', as in 'problem', 'psychologically' etc, but also the 'd' at the start of sentences and the 'r', which I notice I which had changed - seems less pronounced). I have had two weeks in febraury when all of this symptoms seemed mor or less to have gone (some fascics, but not much, speech ok, dyspnea gone when not exercising), then one day while riding a bike against heavy wind I experienced severe dyspnea, after which I again panicked (I have been an endurance sportsman since long). From that moment on (really starting that day) fascics, speech, dyspnea were much worse.

So why don't I go back to my neuro if I am so worried? Because first of all I know about myself that hypochondria has been around for a long time and I don't want to give in to this. Then, although very much in fear and even convinced that I have ALS, at the same time my being conscious of this hypochondria causes an escape route; being a hypochondriac, why shouldn't all of these symptoms have a psychogenic cause? The third reason is that although the combination of symptoms that I have now worry me very much, I can't explain why before symptoms surfaced and then disappeared, or why they suddenly worsened so much. I also can't explain why, when drinking sufficient alcohol sometimes (trying to escape the fear), but not always, the symptoms (speech) seems to be less pronounced or even gone. So I am in fear (being paranoid doesn't mean you're not being followed), and at the same time in doubt, and trying not tot give in (hoping its all psychogenic after all).

I realize that the above may be hard to read for people on this forum who do have ALS, for when (please) it turns out that it's all psychogenic, I waste their precious time with these words. I apologize for that. I know that this is not a forum on hypochondria. But I suppose there' a lot of people on this forum with fears that in the end turn out to be nothing but psychogenic troubles. My fear though is real and suffocating for it can't be shared with other people, for everyone near to me knows about this hypochondria. When I tell them I am scared, the reaction is whether annoyance or consoling me because of my hypochondria, not because of the illness I think I have.

Please don't think that I am looking for consolation or psychohelp or whatever (Yes, I do have shrink; hypochondria is a sickness in itself). I wouldn't dare. I am only trying to get some answers to the questions I asked above, to try to make sense of the symptoms, in order to fight the fear.

Sorry for this long post, to all ALS patients here, I hope you find comfort somehow, and maybe someone will find time and patience to read this post till the end.

 

[Alyoop]

Hans. I am sorry that you are going through all this. Your symptoms coming and going points way. way, away from ALS. The fact that your symptoms improved when you drank some alcohol, is also pointing away from ALs and pushes more to it being caused by a Psychosomatic illness. I get considerably worse if I have any alcohol. It just wipes me out and I cannot get upatairs without help. It relaxes me too much!
You say you have a psychologist, so really it would be worth consulting him about your new symptoms. Together you could decide if seeing the neurologist again is a good idea. I know what you are saying about the fact that it would be an easy way out if it was psychosomatic, but really its not an easy way out at all. Its hard work and difficult to treat, as I think you already know.

I took myself off to see a Psychologist, as I thought i had a somatiform illness. It would be preferable to a "real illness". I had the opposite problem and it took him 8 months to persuade me that I did not, and to see a new Doctor. He said my psychological problem was a neurologist with an inflated ego.

Psychological things suck. It was 8 months of crazy hell.

So in summary. All your questions and reply point away from Bulbar onset ALS. If you had it , then it would never get better, just get worse.
The symptoms would not be fleeting all over the place, coming and going. If your Dyspnea is new then see your Doctor (not neurologist)It may be easily explained,
Aly

 

[trfogey]

Answering your questions:

Has anyone ever experienced (or has heard about) bulbar onset and dyspnea (not at night, but at daytime, when exercising but also sitting still, all the time really) almost from the start of the first symptoms of bulbar onset (percieved speechproblems)

Never heard of anything like that. Bulbar onset and respiratory onset of ALS are caused by the death of completely different sets of motor neurons. It would be extremely unusual for someone to present this way.

Does stumbling over words, stuttering; problems with words like 'problem' - the 'l' and the 'd' at the beginning of sentences) read as common first symptoms of bulbar ALS.

No, the typical first symptom of bulbar ALS is slurring words. This is caused by muscular weakness and/or spasticity in the tongue which prevents the speaker from properly forming sounds that require use of the tongue. The most common descriptive analogy given for bulbar onset is speaking as if you were drunk.

Is it always weakness of diaphragma that causes dyspnea in ALS or can dyspnea with bulbar onset also be caused by something else (weakening of the soft palate or epiglottis or tongue)?

How would muscular weakness in the mouth and throat cause shortness of breath? It might cause episodes of obstructive sleep apnea, but shouldn't have any effect on a person while they are awake.

The shortness of breath in respiratory ALS is very real and it happens 24 hours a day. It doesn't come and go.

Is it common (or known) that bulbar onset is accompanied by widespread fasciculations (legs, shoulder, eyelid, hands, around the backbone)?

Never heard of that either. Widespread fasciculations point away from ALS. They aren't common in ALS patients until later in the disease process, well after symptoms such as clinical weakness have presented themselves.

Does a clean EMG of the legs and arms rule out ALS when the onset is bulbar?

If you had a clean EMG in both legs and arms, you did not have ALS. Lower motor neuron damage caused by ALS can be detected by the EMG long before any other symptoms are noticeable.

 

[Hans]

Thanks a lot all of you for the patience and the replies. My thoughts are with you. I'll go visit a doctor for the dyspnea.