I have read the stickies

[NathanHull33]

Hello all,

I have read both the stickies and they were immensely supportive.

My symptoms match those which both stickies suggest are not indicative of ALS. I would say what first brought me to ALS fear was a twitch in my shoulder just over a year a go now. I entered the dreaded Dr Google and here I am. Since my twitching began over a year ago, it has been all over my body. I weight lift but dare not push myself as hard as I watched youtube video which alleged a connection between physical exertion and ALS. This is further reinforced by seeing athletes of my age (33) stricken with ALS. However I digress. These days my twitches are worse if I have drank alcohol the night before or if I am very stressed (which i am due to the twitches). I had a week or so where I hadon't absolutely no stress and no twitches! I noted that while each time I drank, after a few when I was most relaxed - no twitching. If I took anxiety out of the equation none of my symtoms would cause me concern other than a bubbling sensation I have in my legs. Back to google I go to see some alleged neurologist saying it's indicative of a problem with the "anterior horn cells" which is the start of ALS.

In the stickies where it says "do you argue with us or reinvent your symtoms" that is me to a t. In addition, apart from been petrified of going to the Doctors out of fear what he may say, I know that if I did go to the docs if I were indeed fine it would just be a matter of time before I discredited what he said or found some other terminal illness to decide I have. Prior to ALS I was convinced I had a heart problem. This been a week after I ran Jane Tomlinson 10k for charity. I have never smoked and generally in good health physically. Just mentally I am completely nuts.

I fear this website has lost its intended use and now is plagued by people who have no actual right to be here. I don't mean to offend. For me at least going onto anxiety forums such as no more panic is pointless as they are too dynamic. I am sorry that I need to be reassured at your expense. Truly I am. That being said I am at my wits end. All this started at birth of my children.

Now finally to my point. Do you have any advice for me bar what's in your stickies. IE go to doctors. The people who post and reply here have fantastic knowledge and I guess I am asking for a kick up the backside to stop fantasising and start enjoying my life.

Very kindest regards,

Nathan
Ps please don't close my post under rationale it's off als topic. It is about als as I continue to worry and peruse your pages, arguing that I am not ok and I am terminal. I hope this makes sense.

 

[Nikki J]

Hi
Sorry you are struggling. This belongs in the dihals section so no it will not be deleted or moved

You know you do not have ALS. You know Dr Google is not your friend. You apparently know you have health anxiety. You know reassurance does not work for that- whether from a doctor or from us.

Since you have experienced at least two different unfounded health concerns it seems that this health anxiety has the potential to derail your life. I strongly urge you to address the issue directly. Yes see your doctor. After s/he says no to ALS ask for help. I would suggest seeking cognitive behavioral therapy which is your best bet for the longterm

Good luck

 

[NathanHull33]

Thank you ever so much for your reply. I really appreciate it.

I will try to heed your advice as I know your right.

I fear the apparent correlation between some members joining then year or two later having diagnosis dates. This leads me to worry that the basis that brought me here is similar to what was a prelude to your diagnosis.

The Internet is awful. Or rather Google is. Too much information is never a good thing.

 

[lgelb]

Nathan,

No P/CALS here has arrived via "bubbling" (or any other sensation) of the legs.

Nikki is of course right- please do seek CBT for your anxiety as it is a waste to sleepwalk through life chained to a delusion, when so many here would give quite a bit for your level of health.

Best,
Laurie

 

[Nikki J]

The number of members joining a year or two before being diagnosed is very small. The ones I can think of had significant findings from the start and it took a while to meet the criteria for an ALS diagnosis but they were told from the start there was something wrong.

If you are only comparing join and diagnosis dates It may also be they originally had a provisional dx of PLS, joined for that and then were reclassified as ALS. If you are counting me I joined when my sister was diagnosed. We are FALS

The number of people who have documented health anxiety , join and later get diagnosed is , I think, zero or very close to it.
Please get help before you ruin your life and that of your family

 

[NathanHull33]

I have been "ill" since 2013 when my anxiety started after rolling the above mentioned 10k. From there I have jumped from diagnosis to diagnosis. At the moment I have a headache which I am convinced is a neurological problem. Few week back I noticed a change in my bowel movements and had bowel cancer.

I absolute hate feeling like this. Not because of how it makes me feel but how it impedes my time with my girls. How utterly appalling and disgraceful it is that I am having to seek reassurance off people who I have the upmost respect and sorrow for. Your either ill or caring for someone who is and for me to walse in here, take your time to massage my foundationless irrational fears is disgraceful.

I am truly sorry.

 

[NathanHull33]

final thread and a fond farewell

Hi all,

This is my third and final thread; I give you my word.

Before I feel confident in attempting to re-engage in some form of life that's not railroading into one catastrophic self diagnosis after another I would ask, as a parting kindness (not that you owe me anything) to just go over my symptoms below. I have, as per my previous post admitting I suffer with health anxiety, confessed I have no right to be here and read and re-read your stickies at times number into 10s easily.

Here is my full and final breakdown of symptoms:

Muscle Twiches, mainly calf's but also arms, shoulders and occasionally head. Also perceived twitches in right foot.
NO weakness, NO atrophy. Although I have a weak ankle (same one I perceive twitches on) from a very bad sprain when I was younger. Always been week since.
Leg aches. However, I am on 30MG mirtazapine and this is listed as a side effect. When I do not take Mirtazapine the leg pain is far less and if I am honest probably all in my mind as I am actively looking for it.

Reading your stickies and the previous replies I realise under the rationale given I do not sound ALS symptomatic.

What I cannot get passed is someone I found online stating that there's a difference between leg fascics and something called muscle fibrillation. Fibrillation cannot be seen and is a sign of de-enervation which in turn is indictative of ALS. In addition, leg ache can be as a result of secondary underlining condition which again is ALS. I read that fascics strike the weakest part of the body first and that's my ankle. Now I find myself reviewing my leg to ascertain if I can my fascics or not. The sensation I feel in my leg doesn't feel like twitches, more of a bubbling sensation which again I read a reference to ALS. This final point has been answered so I will not insult her answer by asking for a reaffirmation of it.

I honestly feel that if I could unread the following I would have got over this fear upon my first read of your sticky. While I appreciate this now comes across like I am cross examining your sticky please don't take it as such. You have have no idea how much I value your incredibly supportive and knowledgeable views. I will as promised not be doing a further post and it is my intention to donate some money when I get paid 26th September as a parting token of appreciation. To this end, can someone advise on how I can donate when the amounts are in USD and I am in the UK.

Many thanks once more,


Nathan
33 Years old. Never smoked. Drink occasionally. Physical health good.

 

[Lixen]

Re: final thread and a fond farewell

If you saw a stranger on the street who had ALS, and that stranger was being pushed in a wheelchair because he could no longer use his limbs, would you approach him with your petty ails? If your answer is 'no' then my next question is; Why do you think it's appropriate to do it in a forum dedicated to ALS patients & their loved ones?

You know you don't have ALS. You know you're being dreadfully inappropriate. Please get help for your health anxiety.

 

[NathanHull33]

Re: final thread and a fond farewell

while I apologise for any offence caused I would bring to note that I have posted in a forum that invites posts such as mine, under the correct heading and section. You have chosen to respond with inflammatory reference to my "petty ailments" which I assure you, from my prospective are anything but petty.

 

[ShiftKicker]

Re: final thread and a fond farewell

Nathan, this is the third thread you've initiated. It is IMMENSELY rude to argue with people who have responded to you both patiently and informatively in the past. You have asked people to revisit your previously posted symptoms again (which you have been assured do NOT indicate ALS) under the guise of saying good bye. Please, do not insult the people here any longer with your solicitation of attention and desire for emotional support. Lixen is absolutely correct in responding as she did.

 

[GregK]

Mod notes:

1) one open thread allowed. Do not open another.
2) you were repeatedly told it does not look like ALS. Take 'no' for an answer.
3) seek help elsewhere; we can offer you nothing else.

Thread locked. Do NOT open another.