Am I a Big Dummy?

[Barbie]

:roll:Ok, I admit, I get irritated with the Worriers on the DIHALS section and their perceived "symptoms". But seriously, they talk about CK levels and MUP and Pup and other tests I have never even heard of. Some of them really have their scientific lingo down pat, maybe to impress us.

can someone explain what the significance is of CK levels and MUPs . ...?

PS: I am not impressed, however

 

[affected]

dunno from me, but I only ever read that forum if I'm really needing some entertainment as it just blows my little head firstly that they post the kind of stuff they do, secondly that they get as many replies as they do!

I think those of you who jump in there and reply are amazing.

It seems too that tests are sometimes called different things in different places, but also I agree they are often trying to impress.

We know that when tests get done on my PALS that they only tell us what we already knew, just now they tell us in medical lingo and we forget most of it

 

[ottawa girl]

I don't pretend to comprehend or appreciate the portions of DIHALS posts which refer to such details Barbie.

Most often test results are taken out of context and are only one or two pieces of the intricate puzzle - which is ALS/MND. Quite frankly, to me, test results are irrelevant. Why? Firstly, because like most members, I'm not a doctor. Secondly, because DIHALS are not doctors either. We could debate test results until the cows come home, but all for naught. Where's Nighthawk when we need him?

Barbie, I'm all for taking charge of one's health and researching one's condition, but paint me naive, I'm not one to habitually second guess my physician. For those who do, anything we say to bring comfort or reassurance falls on deaf ears. I'm saddened by the apparent number of people suffering from health anxiety. Why is that? That's what I wonder. Why so many ? Such wasted time and energy devoted to the pursuit of a fatal disease.

If an X-ray shows no fracture but the bone "feels" broken - will a cast "fix" it?

You, Miss Barbie, is no dummy! You've helped me more than you know!

 

[Nikki J]

Hi Barbie

With the DIHALS it is often the case of a little learning ( or googling) is a dangerous thing!

CPK is a blood test and indictes muscle damage. It is sometimes moderately elevated in PALS but there are many many other much more common causes.

MUP is motor unit potential. Large MUPs indicate reinnervation and are ONE of the findings in ALS. However there are other reasons for this and without other abnormalities it is NOT diagnostic of ALS. I myself have that finding myself on one limb but in spite of the fact I am so called preFALS it is not considered worrisome. ( EMG was done for research)

Hope this helps.

 

[ysabel]

omg i was feeling lost when i read those as well. truthfully i know more of what happens than test results! i dont have als but after reading posts i get the idea. when i came here i just posted symptoms and vented about my undiagnosed condition at times. i certainly didnt know scientific terms. and never insisted i had any partticular disorder.

i have parkinsons and stay for the great people i met here. more need to understand its a suupport board not a diagnostic board.

 

[vickim]

I don't pretend to understand all the things my dr told me. I know what I have and that is enough. The numbers wouldn't mean anything to me. I have never asked for the details. I go for 6 months checks and my dr tells me if my muscles are weaker or the same.

I tell my dr what new is happening and he orders tests based on that. I don't think most of these posters know what they are talking about. I have never seen so many big words before. I am not impressed by it either. I am sure they are just repeating what they read on the net.

Most of the research I did after I had a name to my illness didn't use a lot of big words. So I don't know what sites they are using.

I haven't seen Wright on here lately. Has he left?

 

[edwards5257]

I think July 4th 2013 was the last time he was on the site. Not sure why good knowledgeable people drop out and
never hear from them again.

 

[vickim]

He probably got tired of having to repeat himself over and over to the same questions.

 

[Barbie]

Yes, it is irritating when they do not have any real symptoms of ALS, yet they spout all these test results like they are the definitive measure of ALS. How about when they describe in medical terminology what muscles and tendons are affected? O.M.G.

Thanks for the medical lesson Nikki.

remember the saying, a little knowledge is a dangerous thing? that is what the internet has done in the health field. Elaine, normal people understand that even though ALS comes up when they put in their symptoms in the internet, it is not as likely as the other choices. who knows why people grab on to this disease and are determined to have it. We need a staff psychiatrist!

 

[affected]

I think it is a disease of it's own, something like munchausens disease.

I had a SIL with this once, and she would also proxy it on to her husband (my brother of course) and daughter. It was unbelievable, look it up on wikipedia.

Most bizarre was that my brother did end up with a chronic health issue and of course she left him.

They love the drama of the diagnosis, they don't actually intend 'being' sick, but they actually get a kick out of having all the tests done and waiting in a panic for the results, but only if they can talk about it to others constantly.

They spout all the medical terminology they can and go into all the detail they can.

Honest for the first few years the rest of us would roll about laughing, but when we could see she was willing to have a small child put through tests for ridiculous conditions when the child was obviously fine it became less funny, and soon became downright scary.

That's where sometimes I feel that the people on 'that' forum who may be this kind of person are just lapping up any response, even being told they don't have ALS and should stop.

JMHO :roll:

 

[olly]

Its crazy......I did go on the internet before diagnosis to research ms as it was thought I had that.
I did not look into mnd till my diagnosis of umn disease and joined the forum........didn't know zilch or have names for anything that was going on.