extremely worried it's ALS

[Mediasmart]

dear johnson84: why the arguments? you have repeatedly been advised here that what ails you doesn't sound like ALS. You just went to a doctor who said the same thing and you come back with but but but but. You can see a neurologist to put your mind at rest but me-thinks that if you saw God Himself you would want a second opinion.

 

[johnson84]

yeah, my apologies. my mind can't really move past the idea of having ALS.

thanks for the help you guys have offered me.

 

[Clearwater AL]

Your first sentence pretty much says it all...("I've had muscle twitching for the past few years and severe anxiety for longer than I can remember, however a few weeks ago I came across this ALS disease and I've spent literally hours upon hours researching it and stressing about it.") You, yourself... know you deal with severe anxiety. Rather than see a neurologist, which appointments can be months apart and maybe the 3rd appointment before your persistence gives him/her into doing an EMG and NCS (which are not pleasant tests) ... see a psychiatrist where your appointments may only be a week apart or two. A psychiatrist will refer you to a neurologist if he recognizes your symptoms are not anxiety related. Because... chances are great (from your 1st sentence) that a neurologist will refer you to a psychiatrist. Finally, yes... a GP knows when to refer someone to a neurologist. GPs are doctors. Think about psychological help first. And... the tests (if any) don't hurt.

 

[Dusty7]

I agree with Media. If you won't believe your PCP because he won't confirm you self, diagnosis, why do you think you would believe a neuro. Wouldn't you then need to see a neuro specializing in ALS? Then a second opinion from a neuro at the top ranking ALS facility on Australia? Then maybe in the world?

I agree with ClearwaterAL. When you think your doctor is lying or concealing or incompetent, the best help will come from a psychiatrist or psychologist. Try to get to the bottom of what's really bothering you. It's not ALS... but deep down you know that. So what is bothering you? Talk to a professional, please.

 

[megan80]

I'd like to just sy that any comments are appreciated. However, put downs and sarcasm do nothing for someone who is freaked out. I know grooming them and soothing them is Noones job, but this is a support forum for the un diagnosed isn't it? Thankyou in advance to people kind enough to respond with constructive or helpful advice.

 

[Nikki J]

Hi Megan. I agree that civility is important. I actually think that the comments on this thread were well meant and appropriate. This subforum is not intended to be a dwelling place for those whose symptoms are not ALS but more a way station. Some come here and turn out to have an MND unfortunately and move to the rest of the forum. Most who come here are fortunate enough not to have MND. The appropriate thing for those people once their concerns re MND are addressed and especially if ALS has been ruled out by their physician is to move on. For many that means addressing their anxiety. Some have bfs and should be on that forum if they need support. For those who have unresolved true neurological issues I would recommend the neurotalk forum. Perhaps there they will find answers.

 

[Clearwater AL]

Megan80, you wrote, ("However, put downs and sarcasm do nothing for someone who is freaked out."). Please indicate where you read put downs and sarcasm. People who are still freaking out after seeing one, two (sometimes 3 or 4) doctors who tell them it does not look like ALS then come here seemingly trying to convince us that they have ALS will often get stern replies. I've noticed that people who are really suffering from severe anxiety issues also have another symptom... they refuse to accept that they are nothing more than anxiety patients. Recommending to the persistent ones they really need to see a psychiatrist is not sarcasm or a put down. It's clear to any layman that anxiety has consumed them to the point they need psychiatric help. Maybe I missed it but please indicate where you saw sarcasm and put downs.

 

[Kosmoskatten]

There is no sarcasm in these answers, quite the contrary have several ill people taken time to comfort a young person who needs help.

If "see a psychiatrist" is putting someone down in your eyes, then I really believe you need to rethink things. I firmly believe that many people in the DIHALS forum would be "cured" from their symptoms if they saw a counsellor or if severely plagued from paranoia and delusions ( yes, some people in the DIHALS forum actually show signs of that too imho) a psychiatrist.

The first thing I did after my first neuro hospitalisation was contacting a counsellor. It has helped me immensely, and whatever my symptoms turn out to be, the support I have gotten has proven to be invaluable.

There is no shame in seeking counselling. And regardless of what you have; if it is health anxiety, something treatable or something non-treatable it will help you so much more than flushing your anxiety out on a forum while you wait for answers.

 

[Mediasmart]

However, put downs and sarcasm do nothing for someone who is freaked out.

Actually the issue is denial. Anyone diagnosed with ALS goes through the "no. not me. can't be." stage. That is when the physician says "listen up. you got it. like it or not, wishing won't make it go away". At that point you chose to either believe the physician whose job it is to diagnose and tell you straight out, good or bad, or you remain in denial.

Your posts indicate you can't take "no" for an answer and that is fine; your choice. Our "sarcasm" was a nice way of putting an observation repeatedly made by responders; you are in denial and no one is mad at you or dislikes you, but professionals have told you nope and you seem to be searching for a yup. We won't give it to you.

 

[poosmum]

Hi there.. Do yourself a favour and read my previous posts. I was in your position, CONVINCED i had this disease.. utterly convinced. So convinced that i was experiencing all the symptoms that you could possibly get. I COULD SEE atrophy. I couldn't lift things, turn things, hold things... I could see my tongue twitching.. You don't have IT, so please.. get off the internet and get some medication (that's what helped me cope with my serious health anxiety).

Good luck.

 

[megan80]

Thankyou for your comments. I will admit my comments were not necessarily intended for this particular post and chain of letters. However, over my time here reading information on this website, I have seen several put downs and sarcastic comments to several people in the DIHALS . I will not advise as to which members have posted comments such as these. I was merely making a point regarding the fact that people who are suffering from severe anxiety over this illness are probably best ignored if the comments cannot be constructive or helpful. And like I said above, Thankyou in advance to people kind enough to respond with constructive or helpful advice. I realise it is completely selfless of unwell people to go out of their way to assist those who may or may not be in the early stages of this particular disease. And for that I think you are all incredible!

 

[AfraidButNotAlone]

I'm guessing that any hint of frustration or anger expressed by those actually dealing with ALS is unjustified in the face of ignorance, denial, and/or possible psychosis.

Somtimes harsh responses are needed when one does not respond properly to kindness and compassion.

If it makes you feel better ask me. I'll give you a layman's diagnosis in blunt prose.

 

[Mediasmart]

I was merely making a point regarding the fact that people who are suffering from severe anxiety over this illness are probably best ignored if the comments cannot be constructive or helpful.

I sorry if I sound like a broken record but you are NOT suffering from severe anxiety over this illness for two reasons:

1. You don't seem to have ALS so you aren't anxious over the disease.
2. You could have and should have stopped with "suffering from severe anxiety".

We aren't doctors nor pretend to be. Your problem is uncontrolled anxiety and an inability to address that issue.

 

[megan80]

I am sorry if I offended any of you. That was not my intention. At all. I was merely trying to place another perspective onto the the discussion regarding how best to deal with frightened and anxious members. Having been one myself. My intention was not all to cause an argument. So I am taking my leave now from ALS forums for now and will seek support for my concerns elsewhere. I was only hanging around as I am obviously in limbo atm and was thinking it was an opportunity to assist others who come here in fright of the unknown the way I did initially. I wish all of you the best ...

PS if anyone can best recommend the method to remove and delete my account permanently I would appreciate that immensely.