Fears of motor neurone disease

[axolotl]

Not much to add except to say Hancock's explanation is a great one - the brief, bullet-pointed medical sites we get so fixated on don't usually give the nuanced explanation of why symptoms happen, or in what order. Also you need to bear in mind that MND is such a rare disease that it shouldn't really be on anyone's radar unless dramatic symptoms start to present - it's not an explanation for vague feelings.

Hopefully this thread has been enough to convince you what you're describing isn't what you're fearful of.

[CMJ96]

Muscle wasting occurs when the connection has been fully severed. Since the muscle isn't getting a signal to move, it deadens and starts to atrophy due to lack of use or movement. So clinical weakness is noted prior to atrophy, but sometimes can occur along side it. You cannot have atrophy prior to clinical weakness, though.

That bit of info was my saving grace when I picked up some medical texts and journals versus reading crap off google. I thought it was a disease of the muscles for a while during my first initial bout with this fear (sort of like muscular dystrophy) but it's a completely different beast with a completely different pathology.

And it acts the same in all cases of limb and bulbar. Bulbar always begins with slurred speech or the inability to do normal things you could do the day prior (whistle, for example). Limb onset occurs in one limb (two in rare cases) and starts either in the feet or the hands, but cannot start at both areas simultaneously. It also cannot start in any midsection of the body (so for example, your thigh first becomes clinical weak, and then the rest of your leg and foot). It starts always at either the hands or the feet. That's why a notable first symptom for the foot is the classic foot drop, and a notable first symptom of the hand is the inability to do basic movement (like tap your fingers to each other, or create a "screw in the light bulb" motion).

Google is a piece of crap when it comes to this particular disease. There's too much misinformation for people to interpret themselves and thus we have hundreds and thousands of people on health anxiety forums thinking they have als when they don't.

Thank you, this really clears it up. I agree with you about google, it needs more clearer and explained lists of symptoms. I thought the website for the NHS would be useful but I found myself wanting to ask more questions and hence found myself more worried because I was thinking about the worst case scenario

[Nzxt27]

Muscle wasting occurs when the connection has been fully severed. Since the muscle isn't getting a signal to move, it deadens and starts to atrophy due to lack of use or movement. So clinical weakness is noted prior to atrophy, but sometimes can occur along side it. You cannot have atrophy prior to clinical weakness, though.

That bit of info was my saving grace when I picked up some medical texts and journals versus reading crap off google. I thought it was a disease of the muscles for a while during my first initial bout with this fear (sort of like muscular dystrophy) but it's a completely different beast with a completely different pathology.

And it acts the same in all cases of limb and bulbar. Bulbar always begins with slurred speech or the inability to do normal things you could do the day prior (whistle, for example). Limb onset occurs in one limb (two in rare cases) and starts either in the feet or the hands, but cannot start at both areas simultaneously. It also cannot start in any midsection of the body (so for example, your thigh first becomes clinical weak, and then the rest of your leg and foot). It starts always at either the hands or the feet. That's why a notable first symptom for the foot is the classic foot drop, and a notable first symptom of the hand is the inability to do basic movement (like tap your fingers to each other, or create a "screw in the light bulb" motion).

Google is a piece of crap when it comes to this particular disease. There's too much misinformation for people to interpret themselves and thus we have hundreds and thousands of people on health anxiety forums thinking they have als when they don't.

Thanks Hancock this is helping me as well. I just had it in back of my mind lately. Had some weird syptoms going on past few days but if it's like there at of my symptoms seems to be all anxeity related. so if it starts in feet or hands then it would make your toes and fingers not respond like they should? And if you can still raise your foot from foot drop then it's not ALS in your feet. My twitching has been around for 10 months now but I don't notice any real weakness or anything. Just fatigue and soreness some.

[Hancock]

Thanks Hancock this is helping me as well. I just had it in back of my mind lately. Had some weird syptoms going on past few days but if it's like there at of my symptoms seems to be all anxeity related. so if it starts in feet or hands then it would make your toes and fingers not respond like they should? And if you can still raise your foot from foot drop then it's not ALS in your feet. My twitching has been around for 10 months now but I don't notice any real weakness or anything. Just fatigue and soreness some.

Which means it's not als. If you can still use your hands and feet to do the things they can normally do, you do not have als or any other mnd. That's the most black and white explanation I can do.

[Elen]

I have copied this from another thread but it is good reading

It was written by an experienced neurologist about MS but is also relevant to many other fears.

It's important for you to acknowledge that clinical diagnosis, particularly where neurodegenerative diseases are concerned, is quite complex and under no circumstances can accuracy of such a task be accomplished by attempting to draw subjective comparisons between the symptoms you feel and some list of clinical findings consistent with Multiple Sclerosis. I can tell you that with a great deal of confidence and certainty because I'm a retired neurologist and was in practice for more than 40 years.

The case with absolutely all neurological disease is the specific company that certain symptoms keep, or in other words the specific presentation of very specific symptoms known in clinical medicine to be distinguished from other conditions. You make no mention of a single one of these specific caveats which would suggest the possibility of MS.

Self-diagnosis can be the devil's own quill in persons with health anxiety, for the more apprehensive they become that their summations are accurate the more anxiety is produced, followed by an increase in somatoform or physical symptoms which only serves to reinforce their notions. It is a cycle that can be very difficult to break and it's critical for you to realize that the reason for such resistance has to do with the development of a specific type of fear that suggests a threat to survival.

This type of perception causes the brain to respond in a very particular manner that is genetically pre-wired in the brain to identify and overcome the threat such that feelings of safety are re-established. Again, this is an innate survival response induced by the brain and it's the very process which causes persons to feel compelled to confirm their suspicions and because it feels natural, the individual is often convinced by the "gut" feeling that their suspicions are accurate. In actuality, the exact opposite is most often the case and efforts to self-diagnose are far from the requisite accuracy.

Indeed, anxiety can induce physical sequelae very similar to some neurological diseases and the reason for this is quite simply that both anxiety and true neuropathology invoke changes upon the one and only existing nervous system. Thus, the layperson looks directly past this obvious fact and instead is driven to make associations which by their interpretations, seem completely rational and substantiated.

[Nzxt27]

Which means it's not als. If you can still use your hands and feet to do the things they can normally do, you do not have als or any other mnd. That's the most black and white explanation I can do.

Thanks I was thinking so. Just sucks twitching 24/7 I guess my anxeity over the past year really messed up my nervous system. I know the odds are very slim I have even did the math and it's not even 1% of a percent if you know what I mean. Thanks for your help.

[Hancock]

Thanks I was thinking so. Just sucks twitching 24/7 I guess my anxeity over the past year really messed up my nervous system. I know the odds are very slim I have even did the math and it's not even 1% of a percent if you know what I mean. Thanks for your help.

Exactly, which is why it shouldn't be on your radar or mine (or anyone else's on these boards for that matter because I've never seen a post complaining about true clinical weakness).

Twitching is just twitching. Anxiety is a b*tch. It's best to just leave it at that.

[Nzxt27]

Exactly, which is why it shouldn't be on your radar or mine (or anyone else's on these boards for that matter because I've never seen a post complaining about true clinical weakness).

Twitching is just twitching. Anxiety is a b*tch. It's best to just leave it at that.

Yah it is a true b*tch. I really wouldn't wish it on my worst enemy. It sucks when people around you don't really understand but you can't blame them. I wouldn't have understood it either if someone was talking to me about it over a year ago.

[CMJ96]

The thing about head injuries I mentioned though, would something such as a blow to the head be able to cause the illness? I've seen repetitive head injuries mentioned but it doesn't really specify how many, or how severe

[Mummybee]

I agree with everything Hancock said.

I don't suppose you're a BFS sufferer are you Hancock?

Mummybee