SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
what do you think is tthe route cause for my symptoms
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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what do you think is tthe route cause for my symptoms

OK i joined this group cause i don't want to be the only one out here feeling lost cause i have an unknown disease of some sort first of all i had this problem from age 16-43. but the funniest thing is the symptoms kinda
went from one thing to another.. bottom line is i'm still not completely fixed well whatever you want to call it and i"m fed up i want to know what the heck i have.
it has cost me jobs and possibly my marriage.

it involves irritability,fatigue, insomnia,Mal nutrition,mental dysfunction and muscle spasms poor concentration. I've taken all sorts of vitamins and energy drinks to help ward off the symptoms but they always return especially when I'm stressed or unhappy.
Tags: Lost, lost unknown condition
6 Comments
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2012515_tn?1353879125
Welcome!
I'm sorry you are going thru all this and for such a long time.:(
Being in limbo stinks, but I guess we all have to start there.

First, Have you already been to a doctor about this or a neurologist?
If not, that is the first place to start.
There is so many things that it may be and it could be something simple or something serious but you do need to get to the root of it and have tests,mri's and labs done.

I'm in limbo for possible MS but I was just dx'd w/celiac so soon I will know if it is that or MS.

Just know you are not the only one out there and you do have a great support group here.:)

I've found many wonderful people here that I call friends.I'm blessed.:)
Mrs.Aristotle(Maria ) started this forum group, so she or some of the others will come along to post to your question too!
They're ALL wonderful!

Many blessings,
Tammy:)
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Avatar_f_tn
Hello. Sorry to hear of your long term suffering.  Your symptoms are nonspecific, but then I imagine more than one doctor has told you that.  Being in New York, have you considered Lyme Disease? Many people test false negative, but most doctors don't know or don't believe that is possible.

I highly recommend finding a Lyme Literate Medical Doctor near you to get checked it for Lyme and possible coinfections.  It is so much more than sore knees and a rash!  You are also welcome on the Lyme forum if you'd like to explore this possibility.

This medical document was really helpful for me in my research. I have Lyme and Bartonella, and tested false negative for Lyme twice before testing positive at IGeneX.

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

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Avatar_m_tn
i really appreciate your concern any ideas or special things you find on the internet please send them to me articles and I'll do the same and let you know whenever i do see a specialist abut this problem.i recently got kicked out of my wife's godparents home and been traveling back and forth to my mothers and now i was told i can only come over and see her for a while but i cant spend the night i love her very much but we are at odds because of her god parents decision both of them know of my unknown condition.
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Avatar_m_tn
thank you for replying and showing much concern i am so happy that i joined this group we maybe limbos but we are special in gods eyes.
i been reading some interesting articles online about microbes and different illnesses its always good to be aware of things in our environment.



education is the key.
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Avatar_f_tn
Good day, I am so sorry you have gone through so much. I am a limbolander for possible ms as well. Although, I am not so sure anymore, due to some great input from this forum, and the MS forum. I would check out the health pages on MS they have helped me.

Also, you should do as Tammy has already said, and get a good neuro. Limbo land can be hard but with support like this forum it is a bit easier. My suggestion for your family issues is to talk to them apologize for whatever have gone on in the past. I know that's hard when you feel like you didn't do anything, but you need them. And they need you, so be the bigger person and try to speak to them.

I have been in limboland for 4 yrs, and while my husband and me have had our ups and downs... I don't know what I would have done without him. Sometimes our limboland can be our families heartache too. Remember this and don't give up on finding the answers you so desperately want.

One more thing limboland can only hold you down if you let it. I have found ways to cope through each of my sxs to make it through the day. I am not sure if you believe in God. But praying can be a very strong resource while your in limboland. I pray everyday, and when I feel out of sorts or like falling apart I cry out to God. Good luck I will be praying for you.

Kimberly
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4173379_tn?1355360151
Ask your dr. about hemochromatosis. It is genetic. It is rarely tested for yet it is the most commonly misdiagnosed genetic disease in N America. Google it. May find something of interest. I know we did when my husband was diagnosed a month ago. he is 57.

Good health, cheers
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