SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Toxic mold exposure/long-term neuro symptoms
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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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Toxic mold exposure/long-term neuro symptoms

Was unknowingly exposed to black mold since 1979.  It was in a rental and we didn't know it until it started to smell in 2003.  Began to have symptoms as soon as I moved in, but wasn't aware of the mold, so didn't put 2 and 2 together until it started to smell in 2003.  Have suffered from (among other 'unusual' symptoms) depression, candida, carpal tunnel syndrome, chronic shingles in my sciatic nerve causing constant sciatica, chronic sinus infections and allergies/asthma with constant antibiotics for 10 years, which caused 'leaky gut syndrome'.  The sinus infections stopped 1 1/2 months after moving from the rental.  Developed chronic shingles in my sciatic nerve with flu-like symptoms and stiff neck around the same time as the sinus infections.  Sinus infections stopped when moving from the rental, but shingles/sciatica/stiff neck haven't - 12 years of hell!!!    Had a cyst removed from wrist bone.  This cyst had apparantely been growing in there for a very long time.  It displaced the bone to the point where the tiny bit of bone that was left broke.  The surgeon had to 'excise' the cyst from the bone and replace with a bone graft 'the size of a walnut'.  The surgeon has never seen anything like it.  My theory is that it was caused by the buildup of 'mycotoxins' which are the same as neurotoxins.  The surgeon believes that is possible.  Also suffer with severe anxiety/panic attacks, chronic fatigue and fibromyalgia.  My brain feels like it's 'shutting down'.  As an office worker, I type a lot and can't remember where the keys are on the keyboard, can't make decisions, etc...  3 negative Lyme Disease tests.  Am considering spinal tap to rule out undiagnosed Lyme Disease.  All of this has ruined my relationship with my boyfriend and friends are tired of hearing about my nightmare.  Am tired of being humiliated and treated like I'm crazy.  All of my research points to autoimmune illness. I've lost my good job with health insurance due to all the illness and I have medicaid now.  I can't find an environmental doctor who takes medicaid so I'm going to my first neurologist asap.  I've been trying to heal myself 'naturally' for years now with no good results.  I feel like I'm dying!!!  
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3 Comments
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551343_tn?1350880995
Ah bless you made me cry at the end of your post. I am very emotional today dont know why.

No one should go through all this without a diagnosis its mad.

I would say to you though fibromyalgia can affect you in many ways even cognitively and the more you stress over things the worse it gets for you.

I think you are on emotional overload and that is why you feel like you are dying. I have been there believe me. You kind of just hit a brick wall and dont have the energy to walk around it or climb over it.

When we are constantly ill through no fault of our own, it can have an effect on the people close to us. Its almost if they think we want to be ill. I mean whats all that about.

We dont, we just go on about it because NO ONE IS LISTENING to us.

I have been around a longish time and have coped with some awful things in my time but this beats them all.

I feel as though I have lost my life as I knew it simply because no one is listening to me either.

Sometimes you have to let go and just live for a change.

Chasing diagnosis is really sole destroying.

So you have a lumbur puncture whatif it is negative to anything it doesnt mean there is nothing wrong. It just means at the time there wasnt anything flaring. All these neuro tests are just plain HIT AND MISS.

I have said to a few great people on here sometimes you just have to let go even if its just for a week, a few weeks even a month of two, just to restock your energy.

I have had to do this on more than one occasion and it did work.

The exposure to the black mold could have started something I am surprised no one is testing you for stuff that could be caused through this.

Anyway my friend I am waffling it must be after 3pm I tend to loose my energy from then and my brain starts to get tired.

Please believe in yourself and stay I am so sorry you are in the position you are in right now.

Big hugs. Mariaxxxxxx


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1056589_tn?1273750702
You poor thing......

I am soooo sorry you are dealing with all this.....

Limbo is a very difficult place to be.You need to look within yourself and find strength.
If your friends are tired of hearing you complain honey they are not your friends...Same with the boyfriend. You have enough to deal with on your own than having to be around people who dont support you.
There have been many times (especially in the beginning) that I really wanted to die and seriously thought about it. But if I did that then this crap would beat me.I cannot let this **** win.

You have got to stay strong. What does not kill us makes us stronger!

Please Take Care, Theresa
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527589_tn?1301681778
I know this is an older post but having just posted on the effects toxic black mold I have to agree with you. All these rediculous symptoms do point to toxic black mold syndrome. I wish there was a way to move somewhere else to see if it makes a difference.

Hope you are doin well
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