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Zaphoon

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I don't know what it is with the Wizard of Oz stuff today but you just have to love that fantasy!

Boy, this was an odd visit (if ever there was). Of course, I had to go in there looking my best and behaving myself, funky feet and all. We did the strength test, the sober test (walking in a straight line in baby steps), the ballerina test (walking on tippy-toes) and reflex test. Passed them all with an impressive ballet, I might add. (sigh)

He had a Physical Therapist come in and look at my shoulders because he (the neuro) wants me to start therapy on them. She (the therapist) came in and was taken back by what she saw (so was I!). My right shoulder we've known for a while has been toast but now, the left shoulder is worse than the right. How did that happen:?:

The PT said, "Before any therapy is tried, we need to know the underlying cause of why you have such poor and limitted movement/mobility in your arms and shoulders." (ahem...)

So, she recommended that I see my GP who is to refer me to an orthopedist who will probably start the whole circle around again and I'll wind up back in my local neurologist office who originally gave me a diagnosed of suspected MND.

I did ask about the constant cramping and fascics. His answer was he didn't know the cause of them. Okay... We did talk about Quinine but he was really against it. Shucks! If the doc is against it, so am I. (My mamma taught me that.)

I showed him my funky feet and voiced my concerns about them taking on a new shape. Thats as far as that went... my diatribe.:smile:

Today there was no NCV or EMG because the good and knowledgeable doctor (good news here) doesn't think my problems are neurological in nature. However, having said that, he does want to follow up and set an appointment for me in May. Why? Oh, I know why! Because he knows I'll have gone full circle by then!:idea:

The bottom line: Its anyone's guess but I do feel better with the Dr. thinking its probably not a neuro thing.

Now I'm left with the question as to what to do with my diagnosed line in my signature area. How about, "Still In Kansas" or "Left In Oz":smile:

My wife is at work so, you guys are among the first to know of my big adventure for the day! It is fun and indeed a pleasure to be in the company of such fine folk! My saga continues as I kind of figured it might but this is good. Leave me in Oz and I'll enjoy the company of the merriest of Munchkins!

Zaphoon
 
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Sammantha

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Hey Zaphoon, you sound so much like me! My neuro thought for sure it HAD to be something else and tested and re tested everything.. He even recommended a new internal doc so she would get to the bottom of other problems as they could affect my muscles....... She said it is neuromuscular and when i went back it was a series of appointments and umm hmms? Lets see what happens... Then it became let me send you to someone who knows more than me, and he had the audacity to see that i have anxiety in my chart and say i needed treatment for it before he could say i have brisk reflexes etc.. (I have been on klonopin for two years!) When i asked about my EMG's and different questions he shrugged his shoulders and would say i dont know....... Then he said, i dont think it is neurological... My pulmonary function test came back with abnormalities and they could tell it was from impaired muscle funtion and guess who i was referred to a NEUROLOGIST! AGHHHHHHHHHHHHHHHHHHHHHHHHHHHH So i feel for you and your pain, just click three times when you feel yourself getting aggravated!
 

jennibf

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I like your signature "another day closer". I honestly do not know what to say. How frustrating that we cannot get any closer to the answers any sooner!

What is your gut feeling on this? What else could it be if not neurological? I cannot understand why they would not do an EMG/NCV. Are you good with staying with that doctor?

P.S. You should be a writer---get started on the book!
 
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Zaphoon

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Jenni,

I'm answering your questions in a pm.

I do want to say that the neurology department at Washington University is noted for its excellence. I have confidence that the doctors there are very, very good.

Zaphoon
 
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trying to stay positive

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Personally, if I had been posting while my husband was awaiting his DX, I would have had "In the Twilight Zone" for my signature. That is what it felt like for 2 plus years! Should have gone to a neuromuscular specialist to begin with!
 

Al

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hey Zaphoon. Even us guys up north here have heard of the excellence of GWU. I'd say you're in pretty good hands.

AL.
 

BethU

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Kim ... I'm so sorry you didn't get an answer, but glad you didn't get THE answer. This is crazy-making, I know, but at least your doctors are trying all options to find out what's happening.

"No neuro issue" is really good news.
 

Spacemonkehh

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Hey zaphoon,

This is great news for you!

Wanna know why they want a follow up? to cover their asses.. thats how it works ;)
Now, have a drink and celebrate it! :smile:
 

rose

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Kim, I (obviously) think its great news that a knowledgeable doctor does not think MND. But, why no speculation as to the cause? Has metabolic been investigated? So sorry the karma with appointments and our birthdays didn't pan out for you. The one thing that stands out is that if he was that certain that NCV and EMG wouldn't gain you anything, then that is a huge plus in your favor.

Just don't let it make you crazy (and thanks to you, I've got Munchkins singing in my head, talk about driving someone nuts, thanks:p)

If everything was easy, then we wouldn't appreciate it. I agree with trying to stay positive, sounds like you've entered the twilight zone.
 

jennibf

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I have several things going through my head right now.

I hear "You have entered the twilight zone" in the voice of the guy from the show.

I hear and see munchkins singing"ding dong the wicked witch is dead"

I can hear and see dorothy and company singing "we're off to see the wizard"

I know it is good news for you that they think it is not neurologically related but you still want answers and I completely understand that.

another hug for the weekend ---((((kim)))
 

Spacemonkehh

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I have several things going through my head right now.

I hear "You have entered the twilight zone" in the voice of the guy from the show.

I hear and see munchkins singing"ding dong the wicked witch is dead"

I can hear and see dorothy and company singing "we're off to see the wizard"

I know it is good news for you that they think it is not neurologically related but you still want answers and I completely understand that.

another hug for the weekend ---((((kim)))

Oh by the way zaphoon.. i started watching gumby again after seeing your avatar..

great, googly moogly.. im mature now and im still watching tv shows for kids :-(
 

sdsyd

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Glad you are still singing instead of sighing~!~!

" Everybody LIMBO!"
is stuck in my head!

Cindy
 

lydia

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Well I am happy for you that it seems like not a neuro thing...but bummed that you still don't have answers.

By the way, when I was a kid, I have no idea why, my brother and I called each other gumby and pokey. I was gumby, he was pokey-we did that for years. Every time I see your picture I feel all warm and fuzzy.

Lydia
 

crystalkk

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Kim,

You have a great sense of humor! I guess with all this bull you have to.
I just can't stand when they say I don't think it's nueromuscular, and can't point us in another direction.

Was it an ALS specialist?

What were the results of the your last Emg and when was it?

Like Rose suggested I would really think checking out metobolic stuff, it can cause alot of cramping and stiffness. Have you ever been to an Endocrinoligist?
 

brendapals

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Zaphoon,

Well, it seems like it was a good visit for you, I think.

I keep singing in my head " we represent... the lollipop gang, something, something....the song all those "munchkins" sang.

Best to remain in the land of Oz, than in noman's land, huh?

Keep up the positive attitude and have a great weekend!
brenda
 
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