I Invented a new SYNDROME for Limbolanders

[notme]

Welcome to the definition of my newly named syndrome. It's named "CAN'T SYNDROME"

It is characterized by the following signs/symptoms, in no particular order.

1. Can't use hands without cramping
2. Can't walk without falling
3. Can't clip my own fingernails--no strength to do so (literally, which sucks)
4. Can't sit without back pain.
5. Can't breathe without oxygen
6. Can't sleep without drugs
7. Can't type without hands cramping into God-awful contortions
8. Can't put on shoes that aren't slip-on
9. Can't hold legs still due to spasms


Anyone else have CAN'T SYNDROME?

The folks on the ALS side are lots worse off--their list of 'cant's' is much larger than mine.

Here's what I "Can" do...

I can show any doctor on the planet what a positive Babinski sign looks like
I can show any doctor what spastic legs look like
I can show any doctor what hand cramps and spasms look like
I can show any doctor what hypothenar/thenar atrophy looks like
I can show what hypertonia looks like
I can show any doctor what hyper reflexes look like

So maybe I should name it the "Can/Can't Syndrome" instead....hmmmm decisions....

(This is meant to inject a little humor based on something Johnny Liverpool said in another thread)

 

[HelenL]

Notme, why don't you have a diagnosis with all that stuff? I have less issues than you (well I can't stand up for more than a minute or so anymore), and got the diagnosis very quickly... which of course meant that I didn't believe it for more than 6 months.

 

[notme]

Because I'm 90% UMN, Helen. Only arms are showing any LMN anything. I was making a little fun of myself for all my whining and moaning and groaning.

Feeling kind of 'can't do crap' lately.

 

[HelenL]

Oh, I know you were poking fun at yourself... but I'm nearly all LMN except for brisk reflexes (which aren't so brisk anymore as it progresses), and I was told pretty quickly. I thought that if it were LMN then it was considered PMA not ALS.

Really just surprised that with all the issues they just don't give you the diagnosis... not that we really want it of course.

 

[Alyoop]

What dear Patty needs to do is stop canceling her neuro apps.........not that it can ever be helped, just a series of unfortunate circumstances. Wish someone lived near by who could gather her up and help her get to the Drs! Hey Patty.
It's just a bit too far for me to travel! Darn it!

 

[notme]

Seriously, Aly--she wants to see me--but I don't know what she can do. We're treating all the symptoms -- and I have the $ set aside to go--I just need the 'time' and ability.

Can't go when I can't stand to sit in a car. Last appt I was sitting in the LHEAP office for electricity instead. More important. Helen, I'm all UMN--so my EMG is relatively okay--Almost everything is spasms, cramps, hypertonia, spastic gait, hyper reflexes, loss of strength, etc.

I really don't much care what it is anymore--just so we treat what comes to pass. I was in a mood yesterday to poke fun at myself.

 

[johnnyliverpool1]

neuros...i was told, withhold information on symptoms....why, cos they are in competition with each other......its the cudos there after...keep the tricks of the trade close to there chest......another reason for keeping stum is the hypocondriacts, who armed with dr google could confuse.....diagnosis is not a perfect art..,,until blindinly obvious.....interesting, what....johnny,,,