Re: hello all .. new member here needs lots of help and support

[Guest guest]

Hi ,

Welcome to our group. We have alot of wonderful members here. Most have or are

going thru what you and your family are. We all started where you are, and have

gained a wealth of knowledge from our " sickbuilding " friends. We are sorry this

has happened to you and your family. But, you now have support and help.

-Moderator

[] hello all .. new member here needs lots of help and

support

Our mold story

My name is , 39 yrs old.

12/2005 I started having neurological problems (stuttering, confusion,

getting lost, very little short term memory, loss of balance). Other

symptoms included nausea, hypersensitivity to pain, dizziness, extreme

fatigue, and depression.

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[Guest guest]

HANG IN THERE. I am 24 and been going through very similar thing,

have swallowing probs and many more neurological symps as well. I am

in process applying for disability and still waiting. I know I lost

my insurance and job and life just about at least my life as I know

it. And yes my doc stated I was awfully anxious and seemed depressed

and I told him wouldn't you be if you couldn't eat without choking

and can't find any relief at such a young age. He put me on lexapro

and referred me to another doc. Oops, I guess I get so aggrivated

with theese people. This was before we even found the mold. I

started getting a form of hives where if you touch me I instantly get

a welt, so basicly you could write on my skin. It eventually went

away, too bad if disability was denied I was going to start homebased

business " say it with hives " . Just teasing, I find the only thing

to do to not cry is to laugh. There are many of us out there, don't

doubt your instincts but still keep an open mind.

Mia

>

> Our mold story

>

> My name is , 39 yrs old.

>

> 12/2005 I started having neurological problems (stuttering,

confusion,

> getting lost, very little short term memory, loss of balance).

Other

> symptoms included nausea, hypersensitivity to pain, dizziness,

extreme

> fatigue, and depression. I had to stop working at my job as a

> customer service rep with BlueCross BlueShield because I was no

longer

> able to perform my job duties and went on short term disability. I

> had worked there for 3 1/2 years and loved my job. I was falling

down

> all the time and would get lost at work and in my own house. I

> suddenly could no longer " read out loud " the things on my computer

> screen. Sometimes I can't remember my own children's names. I am a

> diabetic and have hypothyroidism but have had both of these for 13

yrs

> but these symptoms seem to be pretty fast onset and my doctors don't

> seem to be able match my symptoms fully to any of my diagnosis. I

> have extreme pain from peripheral neuropathy in my arms and legs and

> shooting pains through my whole body but because they couldn't

> diagnose me, so they wouldn't treat me. I was tested for so many

> things …. MS, Alzheimer's, dementia, and Lyme disease.... And

anything

> else they could think of. All negative. My grandmother saw a show

on

> court TV about a family sick from mold and she thought of us. She

> bought us a home tester for the mold in our house and the thing

showed

> toxic mold... With this we decided to test further. We had the mold

> in our home tested. They did a tape sample and had it sent out to a

> lab. When the results came back showing we had penicillium,

> aspergillus and cladosporium. The house was not air tested. I went

on

> line to look these up and was amazed to see so many of my

symptoms ...

> I went to my primary care provider of 20 plus years and was told

that

> mold is not part of the American Medical Journal and there for it

does

> not cause neurological problems. He told me that if I mentioned

mold

> again I would be asked to leave. It wasn't even a possibility. (I

> haven't been back since). In the mean time I have been unable to

work

> for more than a year. I was also told this American medical journal

> thing by my neurologist and psycho therapist. My psych test shows I

> am just depressed (need to take an antidepressant, see my social

> worker and go back to work) and have somatoform disorder.

>

> What is somatoform disorder?

> People with somatoform disorder have a number of different symptoms

> that typically last for several years. Their symptoms can't be

traced

> to a specific physical cause. In people with somatoform disorder,

> medical test results are either normal or don't explain the person's

> symptoms. People who have somatoform disorder often become very

> worried about their health because they don't know what is causing

> their health problems. The symptoms of somatoform disorder are

similar

> to the symptoms of other illnesses. People with this disorder may

have

> several medical evaluations and tests to be sure that they don't

have

> another illness. (From: http://familydoctor.org/162.xml )

>

> Now with this diagnosis my short term disability has been denied and

> so have my SSI and SSD…. And now I sit in appeals on all.

>

> The home we lived in was a duplex we live there for 3 years and the

> house flooded 5 times and we were told by property management to

sand

> bag and they never came out to clean up the water. Every 6 months

we

> had home inspections by the property management and showed them the

> mold and water damaged carpets thru the house. Nothing was ever

done

> until the last flood in 1/2006 when the owner showed up and called

the

> property mgmt. They sent out a carpet guy. His answer was that we

> had too much stuff and he could not replace all the carpet with our

> stuff in the house. With that we were given a no cause eviction so

> that they could come in and do repairs to the home. While we were

> trying to pack and clean up for the move we started vomiting and

> coughing so bad we could not continue. We had to walk away… from

all

> of it. Things that meant nothing and so much that meant a whole

lot.

> The hardest part is watching our kids have to go thru so much. No

> matter how much you try to hide it from them …. They know. We had

to

> borrow money to buy a travel trailer and move into a camp ground to

be

> in a clean air environment.

>

>

>

> September 2006 I was seen by Dr. Kaye Kilburn at Neuro-Test, Inc.,

> (http://www.neuro-test.com/ ) who diagnosed me with chemical

> encephalopathy due to mold/mycotoxins, peripheral neuropathy due to

> mold/mycotoxins, and chemical intolerance due to mold/mycotoxins.

One

> of the most important things he told me was that my depression

> accompanied confusion and tension/anxiety usually accompany severe

> impairment and intolerance to chemical due to mold/mycotoxins. My

> mild depression fits this connection and is neither independent nor

> causing impairment. This was very important to me because others

> providers had tried to convince me that all my symptoms were in my

> head and from my depression.

>

> And how about these connections:

>

> In September of 2002 I had a neck surgery, which was successful. I

> recovered from the surgery inside the duplex. 10 days after my

> surgery, I was admitted for emergency surgery for an infection

around

> my spinal cord. With this surgery I had to stay for a week because

> they were not able to identify the type of bacteria that was

growing.

>

>

> In May of 2003, my brother spiral fractured his leg and recovered on

> our couch in the duplex. Drs were baffled as to why his leg would

not

> heal properly. Finally they did surgery to find out what was going

on

> and found an unidentified bacteria growing. His leg is still

painful,

> swollen and purple marbled looking.

>

> In the 3 years we lived in the duplex, my 13 yr daughter missed many

> days of school due to extreme back pains, many UTIs, and sharp

> shooting pains in her legs and hands much like my own. She is having

> testing for peripheral Neuropathy.

>

> We believe my 5 yr son may also have peripheral neuropathy. He hops

> around the house saying he has a broken leg and we have to rub his

> legs often due to leg pains. He has some learning disabilities,

speech

> problems and delay of fine and gross motor skills. His doctor wants

> to send him to a specialist for his pains.

>

> My fiancé is still working but is in a lot of pain with his feet and

> legs but has no insurance to go to the doctor. He also has a

problem

> with confusion and is having problems with his short term memory.

>

> The latest: because of my balance problems and dizziness I fall a

> lot…. Just found out that I have 2 messed up disc in my neck and

will

> most likely be back in surgery…. Also had to have MRI of rotor cuff

> and x-ray of hand for possible broken bones…. Still waiting on the

> results

>

> TO BE CONTINUED……

>

>

> additionally:

> I want to put out a huge " Thank you!!! " to all my friends and family

> at BlueCross BlueShield. Without your love and support, I don't

know

> how we would have made it. When we had to move into a travel

trailer

> the fridge was not working, they showed up with a really nice fridge

> and food to fill it. When we needed clothes because we left all

ours

> behind, they showed up with clothes for all and even from the office

> across the state. One of my friends had a home jewelry show and

> donated her profits to help us out when we really needed it the

most.

> And the jewelry she sent to my daughter and I, make us feel girlie

> again. Then we got a letter from our BCBS friends that they wanted

to

> adopt us for the holidays. It really was an emotional scene with

all

> of us crying tears of joy and the 4 yr old thinking we have all lost

> it. Without them we would not have had a Thanksgiving dinner or

> Christmas dinner. Not to mention all the gifts from Santa. This

> turned out to be more of a holiday season then I could have ever

> imagined giving to my family.

>

> My family and I would like to show our Thank You and appreciation by

> spreading the word. So we have started sharing our story by

starting

> this support group. We are new to this diagnosis and have a lot to

> learn ourselves. Please help us out by helping to spread the word

> thru out Oregon.

>

[Guest guest]

I had to get a neuropsyche test done also before the State Med. Bd

would continue to review my application for Retirement Disability and I

haven't gone back for the results of the evaluation from them but when

I saw my neuro's assistant not too long ago she said it said Conversion

Somatic and I knew then I will not go back a listen to those idiots

tell me that face to face. I actually think their test is made to make

sure we don't get approved for disability when they know we are there

b/c of that. I had a letter from the State Board asking me to get a

complete psychiatrist evaluation and I thought better to go to a

neuropsyche. Well, I got approved for Retirement Disability but I know

with the Somatic crap I'd never get approved for SSDI now so not even

trying.

The funny thing is that I had medical records from an Enviromental

doctor stating Reactive Airway Disease, Chronic Severe Headaches,

Chronic Rhinitis and MRI's that show a brain lesion and symptoms

similar to MS but not diagnostic. He also stated known by Dr.

Shoemaker as Mold Toxicity then had possible Seizure Disorder and

Neurological and said I failed the VCS test which shows neuological

damage.....I also sent pictures of my contaminated airhandler,

crawlspace, people working with respirators and the mold that was at

work also. So.....who do you think they believe? I Won My Case!!! and

I made sure the neuropsyche's office knew I Won also when I requested

my records but they wouldn't send them until I came in and they can

forget ever seeing my face again. They are Liars!!! I'm the one living

with the symptoms day to day and feel the consequences not them.

I hope for all of us one day this coverup about mycotoxins will END!!

I do think my neuro believes but he won't link the lesion to any of my

symptoms but actually the symptoms and lesion are all linked to

mycotoxins. He just made sure he said definately thought the mold was

causing my symptomology and my ENT had found I'm allergic to molds so

making it sound like an allergy response. I wonder what they really

think behind closed doors and the neuro's assistant I saw last time was

very aware of my mold case and commented I was very shakey that day and

was I always like that. I think they are told to keep their mouth shut

and I'm probably one of the few that they see that know about Dr.

Shoemaker ETC. I do wonder if my neuro read the book I sent him.

We all have been thru the same revovling doors so you will find support

here. They sure got me thru last year and I did find an ENT that

prescribes CSM but it didn't help too much while still being exposed

daily at work. Been out of there for about 2 months now but exposed

for over 25yrs with work and home and who knows before that. Like my

ENT told me, stop wasting money at Mainstream doctors b/c they aren't

going to listen or help. He has told me hundreds of times to go to Dr.

Shoemaker b/c my ENT doesn't follow all of his protocol. I can't afford

Dr. S so my move was to get out of the toxic workplace and stay away

where I get symptoms and react to chemicals also. I had extensive work

done last year to remediate and waterproof my home and all that sends

us in a financial crisis but I did it with a loan and now will have to

live on retirement disability and haven't even received my first

paycheck this year.

I do hope things will get better for you and your family. They need to

take the Somatoform crap off the medical journal . I do not think

anyone can be somatic and there isn't really a cause. That is so

ridiculous. And my symptoms surely lasted longer than a few years and

still happening. Rhonda

>

> Our mold story

>

I was also told this American medical journal

> thing by my neurologist and psycho therapist. My psych test shows I

> am just depressed (need to take an antidepressant, see my social

> worker and go back to work) and have somatoform disorder.

>

> What is somatoform disorder?

> People with somatoform disorder have a number of different symptoms

> that typically last for several years. Their symptoms can't be traced

> to a specific physical cause.

[Guest guest]

Hi -

I'm turning 42 this year, and I've had an awful lot of your neurological

symptoms, although not quite as extreme as yours have been I think - I haven't

gotten it figured out yet, but we had a post in the last week or so that talked

a lot about Central Nervous System troubles and seizures from mold. I hadn't

seen an explanation of 'psychic seizures' before, but I think that's what I've

been having. I've just moved and am still getting my doctors figured out, but

I'm going to be working on this with them - I've had several spells where I've

lost track of where I was and what I was doing and it's been pretty terrifying.

Also had several falling spells and loss of balance and other weird stuff.

About SSDI - do you have a doctor that thinks you're crazy enough for him to say

you've got Chronic Fatigue or Fibromyalgia (since so many doctors think those

things are in our heads)? Realize that getting covered by SSDI and getting to

the bottom of what you've got are two totally unrelated things - you probably

know that since you've worked for an insurance company. I think CFS can get you

covered for SSDI - or a seizure disorder might... I'll be glad to see if I can

work with you on some ideas of the list if you'd like.

I'm concerned about your daughter's UTIs - do you have any blood work for her

that might show how much creatinine is in her blood?

Best,

Haley

<lazidazi41@...> wrote: Our mold

story

My name is , 39 yrs old.

12/2005 I started having neurological problems (stuttering, confusion,

getting lost, very little short term memory, loss of balance). Other

symptoms included nausea, hypersensitivity to pain, dizziness, extreme

fatigue, and depression.