SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Hello!
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
521 members
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Hello!

Hello Friends!  Just thought I'd pop in to let you all know that I am still around.  I know I haven't posted or come around in a REALLY long time....

These last 6 months or so have been a real roller coaster for me, which has contributed to me not being around.  As some of you know I got my dx last Dec or Jan (I can't even remember anymore.  I think it was Jan).  About 4 months ago I got my dx taken away from the neuro.  It was taken away because there were no changes in my MRI in the last year.

Ever since then, I have not gone back to see any doctors except to get my medications refilled and 2 trips to the walk-in due to severe pain.  I am slated to go back to my original doc in about 3 weeks to see where we go from here.

On a positive note, I got fitted for a new AFO that I should be getting this week.  It's called "Toe Off" and it's supposed to work fairly well.  So I am hoping that will make me a little more mobile, (I've gained about 30 pounds in the last 1 1/2; 10 in the last 3 alone!) so I can lose a bit of this weight.

Anyhoo, I hope you are all doing well!  I also want to thank those of you who have continued to send me notes and emails with words of encouragment, thoughts, prayers, etc.  Although I don't know if I will be hanging around much, I am still here and pray you are all having relatively symptom free days/weeks/months!

Love and hugs!!!
Sarah
4 Comments
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Sarah,
It is so good to hear from you.  I've sent a few notes from time to time but just know that I pray for you daily and I will contiue to do so.
Good news w/AFO. Yeah! I hope it helps and I hear you on the weight gain.

I"ve got my share to lose too!

Well, please take care of yourself and I will be praying that your upcoming appt will be of benefit and of the good for you. Prayerfully this Dr will be a good one and you will get answers and dx'd with out them taking it back.
Limbo #*#*$.  But God is still good!

Hugs and blessings,
Tammy:)

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So sorry to hear you are back in Limboland.  How frustrating!   What kind of pain do you have?  Chronic pain gets old real quick.

I hope you can get a good re-start with your original doctor!
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So good to hear from you!  It is so funny -  I was just thinking about you on my drive into work -  what a coincidence!  Why your doctor took away your dx because of no change in MRI is beyond me.  My doctor was thrilled that I didn't have a change at my one year MRI  = doesn't mean I don't have MS just means that there has been no progression.  Find a new Doctor if the original one doesn't give you answers.  

Hope the AFO works well for you and you can be more mobile -  I know you have small kids so this would be great.

Don't be too much of a stranger - and I am always here if you need me

Love and Hugs
Tracy
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Hi Sarah,

I am so glad you popped in but annoyed at what has been going on for you. I agree with Tracy that it seems odd just because ther have been no changes on MRI it would take dx. away.

hmmmmmm..my doc was happy mine has been stable...funny how docs differ.

Be well. and safe and keep seeking!!!

Love Jibs
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