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is this Bulbar? PLEASE HELP!


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Old 03-30-2018, 02:56 PM   #1
William49
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is this Bulbar? PLEASE HELP!

Hi,

I am a man aged 50 and I am VERY worried I have early bulbar onset, can anyone help me?

3 months ago I felt like my throat was closing up and tightening. Along with this I started having twitches in my feet, calf and thigh (right.) I saw an ENT who examined me for my throat with a camera and he saw nothing and told me it was more than likely is globus.

As the weeks have gone on my twitches have got worse and my tongue has started to feel real weird! It feels like I am touching a battery with the end of it, like a burning sensation and it has started to feel real heavy and if I can use the word "crampy"

3 weeks ago I was having trouble swallowing and it seemed to get better but over the past week it seems to be getting worse, I am feeling like a pain and heaviness in my tongue and the back of my tongue near the throat feels like its hard to move even though it isnt. My jaw muscles feel like they are moving and tightening but yet I dont see anything.

I have have started to have post nasal drip and my arms after I hold them up seem to tire quickly, mainly in the biceps. I do not see any atrophy and I can still raise them above my head etc.

I am now convinced I have Bulbar ALS as I seem to have many symptoms of this awful disease :-(

Can anyone give me any advice?

Thanks

 
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Old 03-30-2018, 07:11 PM   #2
YaYagirl
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Re: is this Bulbar? PLEASE HELP!

Yes, William,

My advice is to stop with the self-diagnosis.
Anxiety is very crippling and it is not going to help you.

Get out in fresh air and deliberately walk each step, making yourself breathe slowly, deeply in and out for 20 minutes.

Take a low dose or half a pill of Benedryl for your nasal drip.
Panicking will not help you calm down or save your life.
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Last edited by YaYagirl; 03-30-2018 at 07:12 PM.

 
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Old 04-06-2018, 02:50 PM   #3
William49
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Re: is this Bulbar? PLEASE HELP!

Just an update on my symptoms (sorry its a long post) and consequent findings for those of you in a similar situation to me...

All of my symptoms I felt were increasing so I went to see a Neurologist. Despite me being 100% certain I had ALS my neuro did not seem too concerned at all. He said to me that I was standing in front of him with fairly normal reflexes, no muscle atrophy, no weakness etc. and from what I was telling him he was not concerned or thinking of ALS. I told him why I thought I had it and how could he not even be considering it. He said he has seen many ALS patients and none have had what I was describing to him. He said most of the time when patients come to him and they have it, many are not turning and self-diagnosing themselves with it, they most often than not turn up unaware they have it and present him with different symptoms, they usually have weakness, problems with the voice, atrophy etc. He then went on to tell me yes I had twitches but in his opinion, it was more than likely BFS. He did say he felt I was suffering all the major signs of anxiety. I asked him was he going to do an EMG on me and he stated he did not even feel it necessary, the results are also down to the interpreter and that even if he did it and it was clear would I be convinced?

I went away rather annoyed with him. So I went to another Neurologist for a second opinion, he also said he did not feel it was ALS.

A short time later I felt my symptoms were getting worse, twitches everywhere and in particular, I was having a constant nasty twitch in my thigh muscle above the knee. I could not take this anymore so I went back to the first Neuro for a follow-up...

He was very understanding and gave me another physical examination and said his opinion still remained the same that I had BFS and that I was also suffering from hypochondriasis. He said he could clearly see the twitch but it was of no concern for him and yes to a degree I was right in that time would reveal with utter certainty if it was ALS or not.

We discussed an EMG and again he said he felt it not necessary but to ease my anxiety he would do one and give me a running commentary. I accepted but of course, I was petrified because in my mind I was convinced I had it.

He gave me two tests I think, the first one was in my left arm where he attached something that kinda gave me electric shocks. He put it on my elbow and put wires on my fingers and this electrode on my elbow kept clicking and giving me shocks! He then did the same by putting it behind my left knee and the wires were on my feet and ankles.

After this he then had this needle attache to a wire, he looked at my left thigh muscle and said "This is the one that you feel is twitching badly and it's due to ALS right?" He then stuck it in my thigh and started telling me what he was doing and the sound and noise wave that he was looking for on his computer. A kind of white noise sound was coming out of the speaker and told me to tense my thigh and when I did a lot of crackling noise happened. He told me to relax and then everything went quiet. He explained to me that with ALS there would be certain markers and told me what they were and he asked me "Do you hear what I am describing?" When I said no he said "Exactly! because you don't have ALS!" He then stated that this one muscle for me would not be enough so he said "let's do your right calve where you said it all started from 2 months ago and I am sure the same results will show" So he then stuck the needle in my calve, gave me a running commentary on what ALS would look like visually on his computer and the sound it would create. He then said "Listen and look silence... Nothing! Ergo you do NOT have ALS"

After this, he then said "Shall I do more muscles or are you now going to believe your Neurologist? I can do more muscles but the same result will occur but for sure you will go home and convince yourself you still have it as I did not put the needle in your tongue or bicep etc. Where does it stop?"

He then stopped the test and sat me down and said to me "You do NOT have ALS regardless of what you have convinced yourself of. I am the Neurologist and my clinical finding is that you have BFS and are suffering anxiety. Do you trust me now and feel at ease? An EMG is a good tool to help confirm an ALS diagnosis and I can tell you right now if you did have it your EMG would have showed something but yours is clean!

He then printed me off some pages on his computer on dealing with 'health anxiety'

Sorry this post was so long but I wanted to share my story with you all so those of you in the same situation as me who are worrying and stressing. It's amazing how anxiety can bring on a LOT of symptoms and play with your mind, also the WORST thing to do is self-diagnose and google your symptoms.


What a lovely Neurologist he was and he was right... When I got home I started asking myself "Can his test be really conclusive as he told me some doctors test 5 muscles and some 10 yet for me, he just did my left thigh and right calve. What if it is in my tongue or my bicep?" He was 100% correct, so with this knowledge, I took some time out, chuckled and said to myself "NO! you WILL accept his findings"

You know what is really kinda funny, is since yesterday and the EMG guess what has significantly reduced? Yup... My twitches!

Wishing you all the very best in your health.

William

Last edited by William49; 04-06-2018 at 03:18 PM.

 
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