ALS is Incurably Fatal - A Reality

[BandersnatchF]

I don't think it's just the neurological component, though that's part of it. It's perhaps more the finality—A/L/S is incurably and relatively quickly fatal. Stomach cancer is neither. MS is neither (at least according to my brothers who have it ). Heart disease is neither. Sure, all of these conditions can kill you, but they can be managed (if not cured) in many cases. Hearing "80% chance of survival" doesn't guarantee you're OK, but it means that there's hope.

There's only one other disease I know of with a similar prognosis to A/L/S, and that's pancreatic cancer. If you read , you'll see that he compares A/L/S to pancreatic cancer, and for good reason. Thing is, pancreatic cancer is straightforward to diagnose, while neurologic diseases are notoriously difficult. That's one reason why those with health anxiety fear neurologic dieases: vague symptoms and often poor prognosis.

To answer the original question, we're here in large part because we fear what twitching might portend. For most of us (certainly for me), the twitching is at most a minor inconvenience; it's the anxiety surrounding the twitching that's far worse.

 

[jodid]

For me, I think it's mostly the weirdness of it all that brings me here. If we all had some typical and well understood chronic illness, like diabetes, I don't think we'd be here. It's just that very few people (including doctors) understand what we're experiencing, and what we're experiencing is strange indeed, so we need to get validation from others who truly get it. And then of course there's the uncertainty about where this might lead. This is still not a very well defined illness, so we tend to not trust our doctors entirely. I think I'd be a basket case by now if I didn't know that there are others who are experiencing the same things that I am. Just knowing that I'm not the only one in the world whose body has a mind of its own helps me to go about my business without worrying excessively about it.

Jodi

 

[stevenpaulo]

I've never had any form of anxiety about this disorder, or any worries about MND or any other disorders that can be associated with PNH. either before or after diagnosis. I put this down to having the ability to examine the facts and think rationally. If a new symptom crops up (and they will) I accept it as part of having PNH and just get on with life. If anyone seriously believes they have MND then they should be posting on a forum for that disorder. You need to accept BFS for what it is and stop looking for something else more serious every time a new symptom appears.

One other observation, the people who contact me through another web site about this disorder tend not to have any concerns about MND, MS etc. ---- strange???

 

[DarthPete]

There you go again Steve, being the voice of reason (although I still won't touch a meat pie).

 

[skepticpalooza]

The anxiety angle really is interesting. I think I can honestly say that I have no fear that I am or will suffer from ALS thanks to a clean neuro exam, EMG, and several months of random twitching. Like most of us, I did have quite a bit of anxiety while waiting to get the EMG - more so than I fully realized at the time. Kind of like not realizing how congested you were when you had the flu until after you recover. I think I had a mild PTSD thing going for a bit afterward aggravated by the fact that the exercise intolerance was denying me my biggest stress reliever. The twitches themselves I couldn't care less about although I enjoy reading about the different things that people have tried to bring relief to their symptoms, which is why I drop in to lurk a couple of times per week. Now, it's just more a matter of keeping the determination to keep the exercize intolerance from keeping me from what I want to do.

 

[Valentine2]

I agree with what Jodi D said about the weirdness of it all, the lack of concrete information about BFS/BCFS to say nothing of the lack of investigation into treatment. I also think people are different as far as 'thresholds' for fear like mine is quite low whereas Basso and Mark's seem to have been able to harness their fears through religion, spirituality etc. People on here all are at different stages of this syndrome too, some have had all clear tests and some have had inconsistencies and
some have not had any tests at all and I think that naturally affects their levels of fear and creates much variability. I also think people's individual life situations play a role like people with families of their own and a good support network usually do better with stress in general as opposed to people who are single and lacking a support system. I guess that's why I keep coming to the board. I don't feel that I come to the boards to punish myself in any way whatsoever. I honestly just find it comforting to communicate with others about the baffling syndrome. As far as what we do on own own time eg. 'off the board' I have gotten the 'why do you torture yourself when....' and all the rest of it.

For me it is just the 'nature. of ***, what happens to the body, the debilitation and the expenses that I worry about. And because I feel that it IS one of the worst diseases one can get I do find it hard to contain the fear of losing control of your life. And I have been certainly, absolutely diagnosed with clinical anxiety aswell from way back. So I think the question originally posed cannot be answered in an objective manner with the goal of finding a way to control fear. I think everyone has to make up their own individual path towards controlling fear and that there isn't always an answer or quick-fix that everyone can just automatically adhere to. That's
why when I first came on the board I was somewhat frustrated with everyone telling me 'you're ok, you're ok' as on one hand I wanted to hear it but on the other hand I wanted someone to say 'yes it is scary isn't it' Perhaps it's morbid but just knowing I'm not alone in this- even if the people are scattered all over the globe- is one of things that I am drawing on in my struggle to control my own fear. Unless you're just born with a certain type of personality, I think the whole fear thing is just something to work on day by day, using different resources. Identifying peoples' 'specific' sources of fears aswell as 'specific' strategies for coping would I think be a good idea.

 

[ristinaL91]

I tried to post a reply thanking you all for your reply's. I dont know what happened to it. A lot of my posts have been getting lost in cyber-space somewhere?

I appreciate all the thoughts. I have been in the dumps lately after doing so well for a while. It is amazing how new symptoms can put you back in a day from where it took you months to get to?

ristinaL91

 

[Jackie]

Hi Steve,

Thanks for your input.

I tend to focuse a lot on the paraneoplastic syndromes as the reason for my parathesias etc.

Have you had the tests taken to exlcude this?

Thanks
Joanna

 

[stevenpaulo]

Hi Joanna,

Maybe because of my laid back attitude to this disorder I tend to go with the flow and never really give much thought to what tests I've had or the results. You can't alter what the tests might find so I've never worried about them. Obviously I know about the MRI's (2), EMG's (4) and 1 muscle biopsy which all told probably sounds like overkill, but it was only the first MRI that I personally arranged and paid for while the rest of the procedures where carried out at the request of my neuro.

The MRI's where clear as was the muscle biopsy. The EMG's must have shown single and multiple discharges because I was given a diagnosis Neuromyotonia. I was tested for VGKC antibodies and this was negative. I've been seeing my neuro twice a year for 6 years and have blood taken at least once a year. At the 2/3 year mark they detected thyroid antibodies so I've been told I will probably develop hyperthyroidism some time in the future.

As to what else they looked for I've no idea, but I have complete confidence in my neuro. If they had found anything untoward then I'm sure I would have been informed about it so I presume they found nothing and I've never enquired. I'm 10 years into this disorder and my symptoms have remained the same.

Sorry this reply is long to what was a straightforward question, but I thought I would explain my attitude to tests.

Steve.

 

[Jackie]

Thank you so much Steve!

I have read you home page which is really, really good and informative.

I am going for some tests at the end of thismonth, after I guess I will develop the same attitide as you...I hope anyway.

May I ask you, do you have pins and needles, buzzing sensations/parasthesias as well?

Thanks for your help.

Joanna

 

[stevenpaulo]

Hi Joanna,

I always find it difficult to describe my symptoms. First off they are confined to my legs i.e. back of thighs and calves, and have affected these area's from day one. It is best described as constant soreness/discomfort which I suppose you could liken to burning sensations and it is always more noticeable while resting. Sorry to be somewhat vague but it's the closest description I can give.

Steve