SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Just wanted to check in
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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Just wanted to check in

Since my DX in December things have been progressing right along so to speak - on a DMD - Avonex and today will be my 4th shot and so far only side effects has been a low grade fever.  Physical Therapy has helped tremendously and no longer use my crutch to walk down to a cane and in some instances not using anything.  My AFO was made incorrectly and it is being remade,  Right now not using anything and doing really well,  My Physical Therapist is amazed at how I now walk. Feels good when I leave there and am doing so well.  Have inquired about the Bioness walk aid system and they are coming out for me to look at device.  Not sure if insurance will cover cost but figured worth a look since foot drop is my one main sx.  I have a few other small ones but nothing as severe as this,  As my legs get stronger though even that is subsiding.

So far so good.  Medically speaking.  Now to get the other parts of my life in order but that will come in time.  

Amazingly so it is nice to write something positive since my DX.  Because when I first got it all I could think of was poor me.  I guess when you have a disease such as this that is common and I still have days like that but not every day anymore!  

As I said just wanted to touch base and say hi to all!
Tracy
17 Comments
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956292_tn?1334058469
Hey,

So glad to hear. (Especially about Avonex) I am gonna be starting mine soon and would like to talk more later with you.


SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO Glad you are improving and doing well....Nice to here positive outcomes despite the intial dx.

Take Care toots and do not quit!

Love jibs
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1475492_tn?1332887767
YAY!!! This is awesome news. It brings us all hope there is a more positive for all of us coming. :)

Hugs to you, keep it up and keep us informed!!!
~Barb
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1627868_tn?1333889942
Good to hear from you!  So, you are on a DMD....that's great!  How is it going?  You said you are basically only getting a low grade temp?  That's good!

I, too, am glad to hear such positive news!  Makes me see that there is a light at the end of the tunnel!
Love and hugs!
Sarah
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1627868_tn?1333889942
I forgot to ask, is Bioness another type of AFO?  Have you ever heard of...nevermind, lol!  I can't remember!  But there is another type of AFO that is fairly popular that I was looking into.  I would like to hear more about this Bioness, as I've never heard of it.
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1548028_tn?1324616046
So glad to hear you are doing well.  I hope it just keeps getting better for you!
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551343_tn?1350880995
Brilliant news, glad things are going better then you thought. Onwards and upwards now...big hugs mariax
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1917408_tn?1329427500
I agree with what everyone else has said about how great it is to hear good news coming from someone from the other side of this Dx journey!

I am especially glad to hear about the improvements your are making through PT. That will make a huge QOL difference.

I have noticed I have a very mild issue with dragging my right toes, too. I have been working on consciously picking up my toes higher and strengthening my legs on my own and I think it is already helping me, too. I am going to look up some PT exercises for foot drop and incorporate them into what I am already doing.
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1627868_tn?1333889942
One exercise I was given by my PT when my foot drop was in the early stages was to do the alphabet with your toes.

Point your toes while you are sitting down and trace out each letter with your toes, letting your ankle do the work.  Sadly, this didn't work for me, but it's worth a shot!  You are supposed to try to do it a few times a day.

You could also try to do leg lifts (or whatever they're called, lol).  You know, where you stand on your toes and move up and down?
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1917408_tn?1329427500
Thank you for the ideas!

I am trying the alphabet right now, and I have been doing a bunch of standing calf raises on a mini trampoline today. I have been trying to move 10 minutes every hour, so I did them more like a cardio workout, but I did get a burn so I should build some muscle back up.  My watch somehow got set to chime on the hour, so I took it as a sign that I should utilize it. My legs actually feel better, lighter than they have been and I'm in a better mood so I'm guessing I didn't overdo it? I'll bet they hurt by morning :)
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1760800_tn?1406757051
One exercise my pt has me do is to get into a crouch and walk - kind of like a squat and then walk she calls it sneaky walking and it helps to strengthen your quads, calves and glutes!  It works -  I may get a Butt out of this disease!  LOL!!!
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1475492_tn?1332887767
DUCK WALK!!! :)
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1627868_tn?1333889942
I should try your  "crouch walk".  My butt has begun to get pretty big since all this started, lol!  Maybe it'll tone it up?
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551343_tn?1350880995
omg the visual of that has me in hysterics lol.....
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1475492_tn?1332887767
Don't forget the arm flapping and the quack noise that goes with it... come on, we can do it! :)

I used to do the duck walk in elementary school. I bet it makes us feel young again.

QUACK QUACK

*Big smile*
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1917408_tn?1329427500
These are some great suggestions.

The sneaky walk definitely feels like it could build up some glut muscles! I gave my son a good laugh when he was home while I was doing some of these!
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551343_tn?1350880995
I bet, he probably thought should he ring to get the men in white coats lol.xxx
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1760800_tn?1406757051
LOL!! Luckily I am home alone most of the time so no one gets to see this but the dog looks at me like I have lost my mind! If he could talk I think he would say "seriously mom, what are you doing???   LOL
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