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Johnny am I right in thinking you don't have a definate diagnosis?
What is that at the end of your user name....oh,a #1
Are you genuine even?
........ stones and glass houses!
 
I've stated my opinion about the posters story, but what I really should have done is raise objections to the three points of advice. The first point, get a physical exam is actually a good idea. The second point is problematic in that while the twitching information may be firsthand the ALS information is not. And the ALS information is misleading. There can be, and is, pain with ALS. I cannot understand the bit written about mobility, but that will remain my problem. For now. The third point seems to be just hide your head in the sand and wait it out. I'm not looking for an argument I'm simply pointing out something that should not remain unchallenged and misleading.
 
Seaside, in regards to pain, the way I interpreted the message was that pain is not an initial symptom of ALS, and that has been stated numerous times. As far as pain after a diagnosis, from what I've read it varies from patient to patient.
 
for example, the body will compensate for the weaker ankle muscles of foot drop by over stressing the calf muscles.
 
Text books state there is no pain,in some pals its true.
Umn involvement causes the initial pain.
It comes down to how much umn involvement and spasticity a pal has.
With more lmn involvement there would/could be no pain.
In time pals may get pain due to immobility problems such as joint contractures.
 
jolly olli.......in my eyes , your always right , even when your wrong......id forgotten my number one..good spot your sharp as a shiny button....but are you genuine....neuros in britain dont normally diagnosed pls.......but hey i dont doubt yer........honest............stay well.......johnny
 
Dear original poster,

I am not one to doubt your authenticity and I am sincerely sorry about your Dad's preliminary diagnosis of probable ALS. It must be so upsetting to find out that your parent has ALS. I realize your post was a vent of sorts and I am sure you really needed to get that out.

I do think some of it is a little condescending though and maybe the post should be moved? This area of the forum is "Do I have ALS, Is this ALS?". This is the area for people who "Think" they may have ALS. Your tone in your post seems to talk down to the people who post in this area of the forum. Sure, a lot of the people here suffer from health anxiety and not ALS, you said you had some anxiety yourself over ALS.

Anyway, there are also a few of us in diagnostic limbo and a few that even do go on to get the ALS diagnosis. For those few especially, I think it is just a good idea to try and be respectful.
 
Johnnyliverpool1... I'm kinda new to the forum. Your 'Forum Interest' says, "Diagnosed with UMN Syndrome." I'm not being rude but... what is that?
 
Pg20, I for one, found your story totally credible and I hung on every word. It's always interesting to me to hear how other families went through the process of diagnosis. "Probable" diagnosis is what we heard about my husband until the final tests were in. Fortunately (or unfortunately) that was all within a very short period of time for us, but it wasn't diagnosed instantly! PALS on this particular thread (Do I Have ALS?) seem to be very edgy and defensive, and that's because countless HEALTHY, ATHLETIC people write in, just as you pointed out, that they are twitching, or numb, or fatigued. Their hypochondria really rubs PALS/CALS the wrong way. Your suggestion for these folks to go see a doctor is right on! On a side note, I find it interesting your father was on statins for years. So was my husband. Some doctors believe there is a link. I dropped taking them myself like a hot potato! My best to you, I hope perhaps your father's diagnosis will be wrong. At least if it is ALS, as you said it hasn't involved much more than his arm so his progression is slow. My best to you and your family. Blessings, Nancy
 
My husband is recently diagnosed and we are trying not to just sit and wait. It's hard though! We have 2 small kids that keep us busy so we don't have a whole lot of time now to wallow.

I also don't understand the search for a diagnosis over the internet with strangers. Especially when no clinical tests support it. You see that a lot! But I do understand the need for answers and not getting any is really frustrating.
 
Johnny I am as genuine as they come,that is why I have albums on my profile page of me and my family.
I had genetic testing ,no family history and upper body involvement that indicates umn disease .
It is not hsp as I have significant upper body weakness and bulbar problems......also some minor areas of atrophy including left hand.
Pls is a clinical diagnosis and your right neuro's in Britain don't like to use it but my neuro found no other explanation.........a few years before my diagnosis mnd was mentioned as a possibility which horrified me and I dismissed it....did not know about pls then.

Sorry for my critical post,i was just making a point ......but for the record I do feel your genuine.
 
Pg20, I for one, found your story totally credible and I hung on every word. It's always interesting to me to hear how other families went through the process of diagnosis. "Probable" diagnosis is what we heard about my husband until the final tests were in. Fortunately (or unfortunately) that was all within a very short period of time for us, but it wasn't diagnosed instantly! PALS on this particular thread (Do I Have ALS?) seem to be very edgy and defensive, and that's because countless HEALTHY, ATHLETIC people write in, just as you pointed out, that they are twitching, or numb, or fatigued. Their hypochondria really rubs PALS/CALS the wrong way. Your suggestion for these folks to go see a doctor is right on! On a side note, I find it interesting your father was on statins for years. So was my husband. Some doctors believe there is a link. I dropped taking them myself like a hot potato! My best to you, I hope perhaps your father's diagnosis will be wrong. At least if it is ALS, as you said it hasn't involved much more than his arm so his progression is slow. My best to you and your family. Blessings, Nancy
I was asked recently if I had been (ever) or was on statins?
 
Will be sleeping easy tonight, as I know Johnny is, knowing Olly thinks he is genuine.
 
dont be sorry ollie....critical as you like...infact i like it when things get edgy...gets the posters posting and takes there minds off things......clearwater, google pls and you will find what uppermotor syndrome is...........have a nice day all, johnnynotoftenwrong
 
kiwi girl...nice to see you, nice.......your always so spot on....loves johnny
 
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