My circuitous route into a pickle

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Zaphoon

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I seem to have gotten myself into quite a pickle but find myself in the best company. The diagnosis given me recently wasn't supposed to come. I thought I had been pretty cleared of any threat of MND and at the worst, would wind up with some sort of MS (and who knows, I may yet).

The only worse thing that can happen now is for things to turn really bad and the next EMG show LMN involvement. If that were to happen, I couldn't be in better company. My concern would then become, "How do you explain all of this? Going from suspected MND to "nothing neurological in nature" back to MND?

Here is the answer, the human factor. We humans are flawed and fallible. Take your car to one garage and you get one explanation as to why your car sputters and clunks. Take it for a 2nd and 3rd opinion and thats just what you'll get, a 2nd and 3rd opinion likely far different from the first.

Should this scare people? I hope not! Things like this are to be expected - bumps in the road. So, here I find myself on a bumbpy, merry-go-round kind of ride that hasn't taken me far from where I started.

I hope we can all find some humor in our human factor filled journey that seems to be filled with one "Aw Shucks!" moment after another.

Cheers my forum friends! The ride's not over yet!
 

sral

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The ride may not be over yet but were here to support you along the way.

Good Luck!
 

Al

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Hang in there Zaph. We're all in this together.

AL.
 

Zaphoon

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Thanks Al. I'm hanging (more like dangling precariously) in there.
 

rose

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Kim I'm very sorry to learn you were diagnosed with this! You've got to be in shock. Know that you've got many friends here to support you.(((hugs!)))) ~ and I don't usually give out hugs to the guys on here, just the ladies, so that should help you to know you're special ;)
 

Zaphoon

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Thanks Rose! That does make me feel special and I hope all of the other guys are driven into a jealous frenzy!;)

Shocked?! Well, he somewhat prepared me for it during my last visit by saying clinically, PLS was a fit but he also mentioned things taking more time. I guess after he read all of the other reports and then saw the results from my latest MRI, things really point to PLS.

Let me say this; if the next EMG shows LMN, I will not be surprised. In fact, I'd almost have to laugh.

(notice I said "almost". this whole thing really isn't funny)
 
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sral

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Are you having another EMG soon? You keep mentioning your next one?
 

hopingforcure

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Hi Zaphoon,
I think your message was insightful and helpful. I totally agree with what you said. I was sure I had ALS from the beginning, but my family believed the doc's who diagnosed. anything but, even anorexia. Now again I do not want to scare anyone, these were just regular neuro's, a als specialist was sure I had it within a couple of minutes.
I kept telling my husband that the doc's are human and not always gospel, and we do see that is true. Remember they are studying medicine..... I think sometimes we think people like doctor's are all knowing, and unfortunately just not true.
Although we are not doctor's some people on this forum can tell you way more about ALS and such, although we can not make a diagnosed. we can give guidance and support. I have had more helpful medicine from you guys than the doc's.
 

olly

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well said hoping ,i have always loved your delightfull way with words.

kim,i am a great believer in "sods law":lol:.
if anything bad can happen you can bet it will happen to me,so i never have any great expectations about anything lol:lol:.
thats not to say i am not a positive person or lack hope,as i said just not great expectations.
i suppose in a way its a good thing,you dont set yourself up for a hard fall.

by the way,i have had loads of hugs from rose and they do make you feel kind of special;-)
 

Zaphoon

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Regarding your question about another EMG, I'm sure there will be another down the road, just don't know when. It was mentioned during my last appointment but as something that would be done down the road.

Olly and Hoping, I agree.
 

hopingforcure

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Caroline my dear friend, the cramps that you have can be from the tone and spasicity, and clonus, or of course all things together. I was thinking tonight that the words that are in the MND vocabulary are just not nice words.
Example Fasiculations, atrophy, wasting, clonus, spacsicity, just not words I like.
So I think when we cure this monster we can say words like.
fit, full, toned, strong, active, muscular....like the ring to those...
 

sral

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Hoping

Those words are much better. And here to beating this monster!
 

Al

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Caroline, I've never heard of sod's law. Recently I was coming into the living room and asked my caregiver when she looked up if she saw a skeletal man in hooded robes with a sickle (sp) following me. She laughed and said no. Tues. had a Dr. visit so we borrowed friends wheelchair van. Wed. Lee was taking it back and lady ran stop sign hitting rt. front of van and sent her into ditch on other side of road. She wasn't hurt but van is pretty heavily damaged. I just wonder when sod will be done with us.

AL.
 

olly

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hi al.
i think maybe "sods law" is a british term...............meaning if anything can go wrong it will.
they also call it murphys law,here is wikipedias explanation.
http://en.wikipedia.org/wiki/Murphy's_law

if something goes wrong like you drop something or any type of unfortunate occurance you can say "SOD IT".:p
sorry to hear about your wifes accident,glad she is ok.
i think we all have sod following us here on the forums.
i may start and put "sod it" at the bottom of my posts.
 

Al

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I'm familiar with Murphy's law. Now that you mention it I have heard Brits say sod it. Just thought it meant oh crap or something similar.

AL.
 
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