NEED HELP

BFS Online Support Group

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NEED HELP

Postby Kamila on January 31st, 2017, 2:33 pm

Hello
I was not on this forum few years - I dont know if anyone still remeber me.
So 4 years ago i got fasciculation and get diagnosed BFS then after some time get calm, then get undiagnosed sickness.I dont know if this sickness has to do anything with fasciculation or not. Here is my story:
Since almost 3 years i have undiagnosed sickness.
3 years ago i got constant sour taste in mouth. Its only gone while i am eating then its back.Doctor thought its reflux and they check i really have reflux. But after get new pills they again made test and no more acid was in my esophagus but still i have sour taste-so its must have other reason.
They also found i have atony of esophagus.
3 years ago i got soft palate pain from inside(behind uvula) no any doctor found reasons.In morning pain is so big that i can not talk-i fell it everyday still.
Now 7 month ago i got cacosmia and many doctor told its neuro case. I also get "head pain"-its not really like pain:its like constant felling my head like in motion sickness, or when someone have fever, or drunk-but no dizziness.I also have nausea.
This "pain" now make me to lay in bed all time-i can not stand-while i sit or stand i fell worst.
MRI and lumbar puncture results is fine.
I have also one more problem-when I close eyes i "see"like movies in my head-the same happening to people when have big fever.This movie is like 2-3 second then morphing to another.
I have also opinion from 2 psychiatry doctors and few psychology that its nothing about psychical problems.Even this what happened to me when close eyes is not psychological because psychiatry doctors told me if it would be psychical i will see this movies all time even with eyes open and also i will mostly dont realise that this strange.
I dont know where seek help. My life is like nightmare-all time in bed. In neuro hospital they told me i dont have neuro sickness but all other doctors (gastro, genetic, immunology) told sure its neuro case.
And in my hospital they didnt even know what means cacosmia. So medical knowledge there is poor.Example? They told "you dont have cacosmia-cacosmia means fell smells which not exisit in reality"
Well ITS INCORECT: felling smells which not exist is called Phantosmia! Cacosmia is when most of smells(even smells which you loved in past)make you puke -and yes this is what i have.I know some people on this forum are neuro doctor so they know what i am talking about-in my country is *beep*, no any knowledge.
Will wait for any answer-especially from some neuro doctors here.
Please help me
Regards
Kamila
Kamila
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Posts: 73
Joined: November 1st, 2012, 12:22 pm

Re: NEED HELP

Postby garym on January 31st, 2017, 9:48 pm

sorry Kamila but you are not likely to get many responses on this site anymore. the owner has stop approving new members and the site is dying. you should seek out other sites for help with your concerns.

Best wishes,
Gary
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Joined: August 23rd, 2003, 1:24 pm
Location: Texas

Re: NEED HELP

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