Living with Unidentified MND/ALS

[PrickLedPin]

I don't understand many people here.I may have MND (Motor Neuron Disease like ALS), i may have ALS, ..etche! You should know FIRST there is NO CURE for MND.If you have ALS, you will know at some time anyway by loosing completely your strength.If you had TONS of exams and ... nothing like ALS.Why to fear?You have been catch by BFS ... for the rest of your life for many of you.And there is chance (because we get older) that some other disease will appears.I have Irritable Bowel Syndrome ... and never fear that i had colon cancer ..even if everyday was a nightmare because of that "stupid" bowel. (i don't even talk to my doc about .. i don't ask again, and again new exam).

 

[simonw00]

Hi PinPrickI don't think that a fear of ALS etc is nonsense actually... the concern that one might be on the brink of developing a progressive and incurable neurological disease with a shortened life expectancy would put the fear of God into most people. Given that BFS and health anxiety overlap to a reasonable degree I am never surprised to read of this kind of fear and I think that it is a useful role for this site to help people work through this fear.Kind regards AmitieSimon

 

[Krackersones]

Simon,Your support on this board is wonderful. I feel I'm coping reasonably well given the reality of my situation. The horrific nature of the disease we fear and the lack of knowledge of excactly what else could explain our symptoms is a recipe for anxiety that I agree is totally normal. Of course, to enjoy life you have to work through the anxiety and get on with living which this board helps me do. These labels of BFS or idiopathic neuropathy are helpful only to the extent that they identify people with similar symptoms who don't have the worst but they really don't explain what people do have. Krackersones

 

[simonw00]

Hi JROI agree with you - these diagnostic labels are useful in as much as they help people come to terms with what they DON'T have (e.g. ALS, MS...) rather than what they do (i.e. BFS vs. neuropathy vs. anxiety...) . I always think it's bit cheeky of us doctors to give people diagnostic labels because 99% of the time all the diagnosis is is a Latin-based description of the symptoms ("Doc my tonsils are swollen and sore" "Yo'uve got tonsillitis" or "Doc, my muscles are twitching and I have no clinical weakness. Is this benign, doc?" "Yes these twithces are called fasciculations and they are benign in your case. You have BFS")Oh well, a man's got to make a living somehow!All the bestSimon

 

[SharonSmoove]

HeyIf it was that simple and we all thought like that no one would be here lol. I think the reason people have more trouble getting over the fear of some thing neurological as opposed to the irritable bowel/cancer scenario is that these things can be ruled out almost immediately. We are a very ingelligent bunch on this forum and through our research have learned that neurological conditions are not always easy to diagnose, therefore feel more anxious because we can't always get a straight answer. Thats why this forum is so useful, people that have been through it and come out the otherside are here to reassure newbies.It took me a long time to believe that what I had wasn't something more sinister. I look back and think what a *beep* head but at the time I couldn't be convinced, hindsight is a great thing.Anyway just my 2 cents worth but we really do have to be patient with the people who are in a panic and at an early stage can't see clearly.Regards allSharon

 

[Krackersones]

The stories of oldtimers who vividly describe their symptoms and report back over long periods of time are the best part of this board. I hope to be oldtimer one day.

 

[Outlook1958]

Well that's the tricky thing about fear. Fear often doesn't come from generic logic, but from an internal logic that we develop. The internal logic of BFS-related fear is for instance: "I have muscle twitching, muscle twitching is symptom of **S, therefore I might have **S". This argumentation is quite static and does not change even if we know that it is incomplete because it feeds on things like reports of **S-patients telling that they have muscle twitching.For example, being afraid of spiders is illogical, but there are people who totally freak out and panic when seeing a spider - and it won't help them much if you tell them that it's nonsense. Many will even admit that they actually know that the spider won't harm them, but they still can't get the fear away.

 

[kylespike]

For me the hardest thing about BFS is that it is often a diagnosis of supposition. By that I mean often our symptoms are not measurable or even detectable by anyone who examines us. Even the Holy Grail EMG will often fail to detect even 'normal' fasciculae (?). Therefore we are often perceived as crack-pots or over-anxious indiciduals. These are real symptoms and they are not caused by anxiety, though I do agree that things can be prolonged or even made worse by the anxiety caused by fear of ALS. I think that fear is perfectly natural and this is where this board comes in to itself. When my GP and everyone around me thought I was imagining an illness I was able to come here and talk to people who have experienced what I am going through now.

 

[PrickLedPin]

What i means is1) There is numerous neurological disorders that have a dead sentence as far as i know, not only ALS.(2) Twitching is NOT the first sign of ALS. Twitching occurs when nerve try to reconnect (as i read), so it means you're already in great disability.The fear came from the fact that peoples knows about MND (TV, internet) but they don't know about for example CMT (Charcot-Marie tooth disease not so strong as ALS but demyelisation anyway)(3) You got that BFS and you are categorized as "crazy","anxious","nervous", "psychotic" ... etc.A good explanation and saying "we don"t know", "you're no alone", "i know peoples like you that have this for years and never had ALS, sure","you can came back in 6 months for a follow up" ... would reassure peoples.Anxiety is a result of "not knowing" and "no help".Take care. Take care.