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SURVIVING NEUROLOGICAL LIMBO LAND - NO DX 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..."

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Avatar universal
Hi all I tried to post in the 'introduction' section a few days ago, but it doesn't seem to have worked. But not a lot is working right now (LOL) so it's probably just me. About a year ago I started having symptoms (numbness, pins ...
  Posted
1475492 tn?1332887767
I am sorry I haven't been around as much! I hope everyone is as well as they can be...or BETTER! We just completed an out of state move and job transfers. It's been a big deal for our family and been exhausting me. Now, it's the holi...
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1475492 tn?1332887767
Name Result Normal Range Thyroid Stimulating Hormone 1.23 milli intl-unit(s)/L 0.35 - 4.94 DHAS, Dehydroepian...
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956292 tn?1334058469
Hey everyone, I had my sleep study done this week and now just waiting for results. Hopefully will not have to do that again. I hope you aare all well. I am trying to prepare for Holiday (it is coming up so fast) and have been busy...
  Posted
Avatar universal
neurological limbo land fits me to a "T" Thats my dx with no tx. After having survived a roll over that landed me in a coma for a little over a week to having extremely suffered from encephalpothy from having liver diease which gave me ...
  Posted
Avatar universal
Hello family, Today is my 7th voice with no voice. During my time with no voice I am learning to listen more. So, I have heard Gods crying for me to get my husband and myself back to him. I also have heard just how hard some of my co-...
  Posted
1530171 tn?1448133193
To All. Dr. Garth Nicolson is coming back to MedHelp next week to answer your Auto-immune related questions. He's a leading expert in research and treatment of many difficult to diagnose underlying pathogenic infectious conditions, m...
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Avatar universal
Well hello my second family, I just wanted to see how everyone was doing. Any new developments for anyone stuck here in limbo land? How has everyone been? Any good news? It's always good to hear good news. Just in case everyone thinks...
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956292 tn?1334058469
Hi, for those of you celebrating this week, have a Happy Thanksgiving! I hope you have a peaceful day! Love Jibs
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1874425 tn?1321976260
This is my first time posting in this forum! I am trying my best to "survive limbo land" and today wasn't one of my best days. I am in the midst of an ugly symptom flare (heavy limbs, tingling everywhere, twitching, extreme fatigue) a...
  Posted
956292 tn?1334058469
Hi All, I know I have been AWOL but I think of you all often..I have been fighting fatigue lately..I wanted to send a hug message to everyone individually to say hi but then thought, that could take all day and I do NOT have the energ...
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Avatar universal
Hi, I have been feeling the trembles. My hands shakes. My mood is sadness. My attention span is short. As a footnote, I am an advent reader but lately that has fallen off. My mind is foggy. Like when thinking of something or wri...
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Avatar universal
Hi, Can someone tell me if spastic hands and feet attributeable to neuro. I mean I have been having some very painful spastism in my hands mainly the left. And both feet have spastisms that made it unbearable walk. I take tizanidin...
  Posted
4173379 tn?1355360151
Hello everyone, and I apologize if this has been covered in other posts, but I haven't read through all of them. What interested me in this group was the "limbo" state that many find themselves, and which my husband found himself for app...
  Posted
2012515 tn?1353879125
Hello to ALL my limbo friends & family. I finally have a brain mri w/wo contrast scheduled for this Wed.Nov.14. It has been a year and 3mths since the last one and it was without contrast. My neuro said if there is no changes then he ...
  Posted
Avatar universal
Good morning all, Today after some deep research and posting in the Lyme forum. I want to say I believe I have lymes. The sxs fit, and I love the outdoors. But what made me truly believe this was what I have. A few yrs back I had the ...
  Posted
956292 tn?1334058469
Hi all, I went to my doc yesterday. He wants to send me for a sleep study as we were discussing my fatigue issues. Is this a common step? Anyone else ever go through this for fatigue with MS He said this will determine if I have ...
  Posted
Avatar universal
Hi, I was told to make sure when I join the forum to give everyone here a shout out. So, here it goes. Hiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiii. Glad to be apart of your g...
  Posted
1312898 tn?1314571733
I don't know about any of you, but I have been working on not talking about anything regarding my neuro issues for at least the past 3 months. I work at ignoring my own symptoms while being careful not to: wince, fall, tip-over, say "Oh...
  Posted
Avatar universal
First off thanks to everyone who has shown support this week. Next today I called to find out blood work results. They said nothing has changed I had a postive ANA reading a titer of 1:80 speckled homogenous pattern. My b12 is low to nor...
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