SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
just looking for support
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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just looking for support

My question would be why?  am i missing something.  I am 46 years old female.  Now confined to a wheelchair.  been 7 weeks this saturday since i walked or stood beyound 2 sec on my legs.  The intro to this group is right no real Dx other than sub catagories.  I am fruastrated beyound believe all real test come back normal.  I feel so alone at times other times i feel like giving up and running away wait i can't run ok bad joke.  It has even been suggested that it is pysco samatic.  Thank You for listining to my ramble  Memaw
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4 Comments
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1719886_tn?1311617631
Welcome to the safe haven! I totally understand your frustration and understand your needing to vent. I have also dealt with all the tests coming back normal and no one being able to tell me what the heck IT is. Do yourself a favor, if it's being suggested that it's all in your head, go to a psych and have yourself evaluated. So that way you can prove them wrong and they can take that label off of your chart. Sometimes the things we have to do to get the proper care often feels like a dog chasing its tail. But it's worth it. I won't bore you with all of my rants-and I do have many. So vent away, we all do here :) By the way, what have they said is causing your inability to walk?

Chanda
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1696789_tn?1317341653
That is the problem.  They do not know why.  I am on a waiting list for a nuero phsyic 4 months my name should come up.  have a herinated disc on 10 and 11 plus a cyst at the tail bone area.  Dr. says has nothing to do with the walking issue.  and niether does the fibro,neourpathy in the feet or the degentive disk changes in the small of the back.  All cat scans, mri's, ekg, emg;s and egg all come back normal.  Thank You for answering all my friends have abandoned me i am a hassel to take anywhere now Captian
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1530171_tn?1362547225
Hey captainmorg,
Most likely mycoplasma infection or co-infection. Even Lymes disease, which is  one of the fastest growing infectious diseases in the U.S. and possibly Europe,  was found to be linked to both Borrellia and Mycoplasma infections as a co-infection.
Muscle pains, fatigue, joint pains, all tests negative and it keeps getting worse!
All too familiar. And  Doctors are sometimes accusing the sufferers that they are doing this to themselves, or that that they are  hypochondriacs or compulsive complainers!
I would choose a slap on the face, instead.
Save yourself some more aggravation and suffering.
Deal only with a specialist that understands the nature of systemic diseases
and has specific knowledge in Borrellia, Mycoplasma and Lyme infections and coinfections

Almost every modern and mostly mysterious neurodegenerative and autoimmune disease has a pathogenic Mycoplasma as an underlying cause for the initiation of the disease.
Dr. Garth Nicolson is the top expert in this field -research and treatment- and also has contributed in medhelp with his expertise. Just do a search.
You can get your life back. just be careful as the conventional medical system is unfortunately NOT on your side with this. Trust me, I know, as I have been through Limboland and more!
And I'm one of the few that beat it 100%. You need extremely thick skin, perseverance
and knowledge to overcome the odds.
As this matter is so complex, please free to contact me.
The biggest problem that I come across, is that peoples' lives get taken over by these
severe health issues, with the belief of getting better getting diminished in the subconscious mind  and replaced by fear, insecurity and hopelessness (deep negative programming).
So stay strong and focused, read other posts here, in the Fibro, Lymes and AutoImmune
Communities, to get a better understanding of what is going on.
And please do careful and thorough research. Take nothing you are told for granted even from your Doctor, Rheumie or Neuro, unless they are true experts in this area of medicine
(which is very rare!).
Blessings,
Nikodicreta




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Avatar_f_tn
hello,

i am so sorry to read about what's happening to you.  have you had any kind of MRI or other tests run at this point, or are they waiting for the neuro workup?  were you ill before you became unable to walk, or did it come out of the blue?

i am sending thoughts and prayers that you are able to find answers very soon.

blessings,
binx
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