SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Frustration.
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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Frustration.

In march I had my gallbladder removed, I woke up and knew things werent right. my left side was tingling, my face felt numb, my left eye was very blurry. They said I was fine and released me, about a week later I wound up in the ER because my husband said I was acting really strange, sleeping all the time, not remembering to do basic things etc. MRI and EEG were normal they wrote it off as a conversion disorder. Since then I have seen neruo, 2 neuro-psych, and I regularly see my psychologist. The first neuro-pysch Dr was extremely rude and after leaving her office I did feel crazy like it was all in my head. after researching it on my own I was convinced that it was a conversion disorder and it would just always be this way. Well, here we are 8mths later nothing is better, things are getting worse went to a new psychiatrist last week he and my psychologist (they have never spoken BTW) feel like it is something neurologically wrong. They have actually both mentioned MS. Well, my primary pretty much refused to do and MRI of my spine til I see yet another psychiatrist he wants me to see and doesnt think I need a second opinion from a neurologist. Its just so frustrating to go round and round and the medical world wants to pass it off to psych and the psych world is saying no, there is something wrong. this does not follow the typical pattern for CD. I didnt even know it was possible for MS to be in your spinal cord and not in your brain. So, to stick with the dx I have and stop battling medical drs or keep fighting because I do have professionals who think otherwise?
3 Comments
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Hello,
So sorry to hear all you are going through. Many of us have been on the medical merry go around as well. It's sad to say but the medical field is usually in it just for the money. Doctors like to make us feel like the crazy ones when they can't fit the puzzle pieces together.

But I have had some good doctors As well. We must remember they are only human. Some of them have way to much on their plates. Still I believe in fighting for your own well being. You know your body better then the doctors, and should fight for what you feel is right.

On another note, I believe God is the best healer you can turn to. So I will be praying for you. I trust God will guide your way and let his grace shine down on you. Either answers will be provided or you shall feel better. This I trust and pray for you. May god bless you,
Kimberly
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1530171_tn?1418143903
Hey me2348.

Welcome to the forum.
Hang in tight, this is one of the most serious challenges in your life.
Obviously you're not crazy, but something got triggered during your surgery on top of the issues that were there that led to the gallbladder removal.

I'll get back to you another time, but for now just think of anything like from previous infections, traumas, accidents etc, that may have any connection to all this.

Take care and don't lose faith.
Blessings
Niko
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Have you been checked out for Lyme Disease? I don't know where you are located, but your story sounds like others I have read.  Lyme Disease can affect the gallbladder, and some Lyme patients have had their GB removed, not knowing what was causing their trouble.

Also, physical or psychological trauma can trigger a Lyme symptom flare up.  Serious sympyoms can show up quickly after surgery, divorce, a death in the family, or other high stress event. Frequently, blood tests are "normal", leading doctors to conclude that a patient has "conversion disorder" or just needs to see a psychiatrist.

I encourage you to come post on the Lyme forum.  Tell us all your symptoms, even if you think they are unrelated.  You would be amazed what a wide variety of multi-systemic symptoms Lyme can cause. (I didn't know my stomach pain, tinnitus, light sensitivity, and blurry vision were symptoms until I saw the list.)

Oh, and if you already tested negative for it, that doesn't mean much. Lots of us test false negative. Unfortunately, most doctors don't know that's possible.
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