SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
conversion syndrome?!
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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conversion syndrome?!

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) and went to the ER today  because I could not take deep breaths. It scared me.

I wound up w a psych eval and they referred me to intensive "day therapy" for two weeks to rule out "conversion syndrome". They said sometimes trauma from childhood, etc. Can manifest itself physically.

I will totally go just to check it off the list, but I don't have any child hood trauma, at least that I recall. I also have EMG's that show nerve damage in all of my extremeties.

Just curious if anyone has had this diagnosis or had it suggested. I felt like they thought I was suicidial!

My "list" of diagnosis that are "checked off" that my docs have ruled out...
-MS, Parkinson's Disease, ALS, Lyme disease, vitamin B12 or vitamin D deficeincies, lupus, diabetes and thyroid disorders,
3 Comments
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1530171_tn?1418143903
Hey Mlkjmom.
Welcome to our little corner of the world.

I had prepared my reply to you earlier and poof! it vanished in a flash!
Now I find that there's a glitch in forum, many 2000 word plus posts
don't get submitted at all. So I 'll restrain myself to post less.

Conversion disorder or syndrome: The "trash can" medical label used when unable to dx neurological based conditions. Waste no time with this one as it is designed as a substitute for "sorry we don't know" which is a little hard on the Ego of most MDs.

Things to look into or to rule out:

1. Pathogenic infections such as  All Borrelia species- not just Borrelia Burgdoferi,Anaplasma phago­cytophilum, Babesia microti, Babesia duncani,Bartonella henselae, Bartonella quintana, Coxiella burnetii, Ehrlichia chaffeensis,Francisella tularensis, Mycoplasma fermentans, Icognitus and other Mycoplasma species, Rickettsia rickettsii, viruses such as HHV-6,nematodes. These are extremely difficult to detect!!!
Do a search her in medhelp for Dr. Garth Nicolson who is an expert in this field and was a contributor here a while back
Your checked off  Lyme Disease, is most likely a false negative.
Monkeys shooting darts are more accurate than most lab findings when it comes to lymes Disease. If you haven't seen an LLMD and if you haven't
done a complete Borellia and co-infections panel using IgeneX Labs, you're nowhere close.
END OF PART 1    



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PART 2

2. HLA panel to verify the body's ability to fight biotoxins

3. Heavy metal toxicity.

4.  Stool analysis  for pathogenic bacteria, parasites, yeast, and levels of beneficial  bacteria, as well as  leaky gut syndrome.

5. CMV, EBV, HHV-6, HSV1 and HSV2 test with MDL labs

6. Hypothyroid type 2- just like diabetes, there's type 1 and type 2.
The vast majority of ENDOs do not look into this. Very common!

7. Deficiencies. Tissue magnesium-not blood magnesium!
Glutathione, Potassium, Neurotransmitters.

8. Comprehensive metabolic profile for organ integrity evaluation as well as fluids and electrolytes.

9.SPECT (single photon emission computed tomography) brain scan
which shows blood flow and more. Offers much more dynamic imaging than MRIs, which are more static.

10. PTSD  Any past traumas including childhood and not in memory.
Hypnotherapy is suggested to uncover any repressed memories and to have them dealt with.


Let me know if you need further details.
Cheers!
Niko
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2012515_tn?1353879125
Welcome to our little limbo group!
Unfortunately it seems to be growing but Everyone here is helpful and we have a few like Niko that has given you great info and wise advice and then Maria(Mrs.Aristotle) the founder of this forum and then some other wonderful members old and new.:)

I will be lifting you in prayer and I do hope and pray the Lord will give you answers soon.
His timing is not ours so until then we must remain patient and trust that in time we will understand the why's? of it all.

Keep us posted and please be sure to post questions or if you need to vent or anything.:)

WELCOME AGAIN DEAR FRIEND!
Many blessings,
Tammy:)
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