Status
Not open for further replies.

paulinhk

New member
Joined
Apr 7, 2018
Messages
1
Reason
Learn about ALS
Country
HK
State
HK
City
HK
Dear Moderators and senior members I express my SINCERE and UTMOST apologies to you all and I ask for forgiveness for my recent irrational behavior and what appeared to be disrespectful actions.

I ask that if you want to ban me again its ok but please could you leave this post up for those who worry if they have symptoms but are probably due to anxiety.

I posted here worried sick I had early ALS onset and I was not convinced by anyone who told me otherwise. I had become so obsessed and convinced that I had it that not I know it was not normal behavior. I did not listen to the valuable and amazing people who try to help us all on this forum and continued to convince myself I had ALS.

It all came to a head where I felt if I post as another member I would get a different answer and I would indeed be right. This actually led to me being banned which is totally understandable.

To all of those who are suffering anxiety and also convinced you have symptoms I ask PLEASE listen to the advice of the wonderful people here and go see a Doctor and do NOT google or self-diagnose yourself, it will get you nowhere!

Here is my (long) story...

After posting on here previously and ignoring the advice of everyone. I felt my symptoms were increasing so I finally 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 up and self-diagnosing themselves with it, they most often than not turn up unaware they have it and present him with different symptoms. 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 yet another Neurologist for a second opinion, he also said he did not feel it was ALS and felt no need to perform an EMG etc.

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 put the wires on my feet and ankles.

After this he then had this needle attached 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 explained to me in laymen terms 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 in my mind 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.. in my opinion, you do NOT have ALS"

After this, he then said "Shall I do more muscles or will you now believe me, 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 can see 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's in my tongue or my bicep?" He was 100% correct in that I would have these thoughts so with this knowledge, I took some time out and said to myself "NO! you WILL accept his findings" I am now also on a program to reduce my anxiety and I am a different person.

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

This is a final message from me to those of you who are suffering anxiety and concerns but have been told by the Mods/Members here in their opinion you are not symptomatic of this tragic disease... LISTEN to them and PLEASE understand that there are real amazing people here who are fighting this disease every single day and by coming here all anxious, begging them for answers and not listening to them you are disrespecting them hugely and for my recent behavior I truly apologize to you all.

Feel free to ban me again but I plead that you allow this post to ride for a couple of days at least.

I humbly apologize to you all and I am sending everyone so much love...

Paul xx
 
Last edited:
Paul, thanks for posting your story as a warning to others.

This forum is not a healthy place for those who experience extreme anxiety. I wish you well and ask that you respect all the hard work people put in to supporting and providing advice to you- please understand it is time for you to leave this behind. Anything further, be it more profiles, further posting, etc, creates a burden for the members here. Be well and seek counseling if you are unable to tear yourself away.
 
Status
Not open for further replies.
Back
Top