SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
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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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its been awhile. i needed to take a break from pure frustration. I have had it with my neuro and my muscular neuro. my neuro wants me wants me to see the mus.neuro but he wants to wait to see me any further until my mom gets a muscle biopsy and he gets the results. so here i sit, in pain, fatigued, and just down and out. my mom has supposed to have been getting this biopsy now for months but she "hasnt been able to cause she cant get time off work cause another lady is out etc............." so i am in another limbo now. and my neuro doesnt really do nothing for me. They are the only ones I am able to see esp since the the muscluar neuro is the only one i have found. I have been given no meds no nothing. I cant take being in pain and no one is doing anything about it. No one seems to care just how much i hurt, how much my life style is going down hill and fast. I dont know who to turn to. I dont know where else to go. I go to a big university cause that is where my insurance sends me. Where else can I turn? I have an appt with the neuro on the 31st and no appt with the muscular neuro until my mom has her biopsy. I cant keep going on like this. I just cant. My muscles hurt, the tingling, burning, hyper sensitivity, the bladder problems, the muscle weakness, fatigue, eye problems, sleep problems, memory problems and so much more just need to go away and the biggest one that needs to go away is the falling. sorry about my rant. I am just so fed up.
2 Comments
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Avatar_f_tn
Well hello,

I would call the muscular Nero and let them know the hold up. Maybe they will see you before it then. Don't give up. I know it's hard but you have to try.

Also, you asked who to turn to. I know that not everyone believes in God but that is who I would turn to. That is who I have turned to. God can work miracles. I will be praying for you. And I trust that things will get better for you. May God be with you,

Kimberly
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1530171_tn?1362547225
Hey chefaid90. It's been a while for sure.

I fail to see the connection with your mom.
Perhaps there's some genetic link, but at this point
who cares really? You need treatment and that's it. Right?
Don't you love it when they treat you like a little guinea pig?
Have you ever looked into LDN -Low Dose Naltrexone?
I've come across 2 different people that had complete remissions.
This doesn't mean that it works the same for anybody with MS, Parkinson's, Chrohn's and other chronic conditions that it's recommended for. (not by MDs. as they  usually shy away from off label scripts, so
it's a bit hard to find an LDN friendly doc.)

I guess you've just about had it with doctors and i don't blame you.
Many moons ago, when I felt this way, I walked away form conventional
medicine. It was a shot in the dark, but honestly, as Kimberly says,
God can work Miracles. I had Faith I would better off without doctors
and guess what! Everything fell in the right place, I studied like crazy
everything to do with health and wellness and I prayed every night, I meditated and things started happening!
It was like I went from Hell to Heaven!
If you can imagine that my Neuro had mixed up my files totally and giving me wrong information and would not admit to it when I challenged that.

Let me offer you one piece of advice. You are MUCH more than the symptoms of your condition. DON"T give power to your disease, nor to your doctor. The Power belongs to YOU! You have a Soul, a Spirit that can connect you to Unlimited Power from Your Source.
You don't have to be religious, you may call your Source: Universe, or God
or anything else that sits well with you.

I have personally witnessed amazing things in my life and I was blessed to
have met people who themselves believed in the impossible!
Like Deborah King who battled Cancer, Bi-polar, Alcoholism, PTSD from years of sexual abuse. And now with all this behind her has become a great inspirational teacher and author.
Dr Wayne Dyer, my friend, teacher and mentor, who recently overcame a bad form of leukemia by REMOTE surgery!!! performed by John of God in Brazil while Wayne Dyer was in his house in Maui!

There are many things you can do to give yourself a REAL lift.
  I understand that with your physical and mental challenges
it is hard, but there's still that little flame inside of you, that can start a real fire of change! Just have to add the right type of fuel. lol! (Courage, Faith , Persistence, Belief, Perseverance...)

Take care and visit more often!
   And...    Be Better, Be Strong!
  Niko
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