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need medical opinions (anyone's opinion) about rare condition.

 
Insomnia
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User ID: 322903
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11/07/2007 03:05 AM
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need medical opinions (anyone's opinion) about rare condition.
i have ear pressure and pain (doctor says my ears look clear so no infection), sinus pressure (mostly happens in the bridge of my nose it's almost like my eyes feel like they want to cross - again no obvious infection) and sometimes double vision. plus i get headaches and neck aches.

11 years ago i noticed alot of clear fluid coming out of my nose and was told it was the csf fluid around my brain leaking through a hole in my skull into my sinuses. i had surgery for it but it didnt work. i still have it and for the last 10.5 years my only symptoms have been clear fluid draining from my nose intermittently throughout the year. nothing else. all these symptoms are new and very sudden. i have noticed no increase in drainage.

i went to my doctor today (my real family doctor, not mediclinic doctors that are a dime a dozen in canada with our universal healthcare, you can just walk into a clinic and see a doctor for 'free').

my doctor is concerned. i cried and told him my quality of life is very bad. i get nauseated sometimes. i have severe anxiety.

it's very easy to see a doctor and present a history of a csf leak. and be told your symptoms are very obvious to a csf leak/inracranial hypo/hypertension. basically i'm a textbook case.

but.

there are other problems that might be factoring in on my symptoms.

one of them is that the extreme stress of my symptoms and general FREAKING OUT thinking all the fluid is going to drain out of my brain and kill me is causing great anxiety. when i go to bed at night, and that's not often because i have severe insomnia from anxiety, i clench my teeth so hard.. when i wake up the next day my teeth hurt, my gums hurt, my jaw hurts. my neck hurts. i have a headache in the back of my head. it's easily relieved by 500mg tylenol and 200mg advil. when the headache disappears so do the sore teeth and gums. that is the only headache i ever really get.

could this teeth clenching be causing my ear symptoms? or a csf leak, intracranial hypo/hypertension? in two weeks one doctor said he saw fluid in my middle ear. another doctor said he saw a plugged eustachian tube from wax build up. my doctor today said my ears were clear. all i know is they hurt and are itchy and feel pressurized. i noticed that clenching your teeth can cause ear pressure and pain because your ears are so close to your jaw.

my eyes. i have graves disease. which can cause your eyes to bulge. so i have seen a opthamologist. when these symptoms first started. the double vision and dizzyness and pressure. i coincidentally had a followup with the doctor. so luckily i was able to get eye testing and eye pressure readings.

all were normal. so there is nothing technically pushing my eyes out. but i feel this pressure. i have alot of clear mucous drainage and my nose feels blocked alot. i blow it constantly and i have allergies to mold. i was tested years ago. could my symptoms be caused by allergies, chronic sinusitus, or a csf leak or intracranial hypo/hypertension?

sometimes i feel like my head is floating. the vertigo. which i'm sure has something to do with my ears being under pressure. i get nauseated but i can't say if it's from the vertigo. or from stress.

all i know is when i take a double dose of clonazepam all i'm left with is sore ears and that spacey feeling behind the bridge of my nose. but the nausea is gone. the stress is gone.

i know this is a long post. but i need opinions. i can't see my neurosurgeon until he 'finds the location of the leak' and i've had ct scans, mris, and they can NEVER pinpoint the leak. my nose fills up over a few days (i don't always leak every day, it's like it collects and then when i tip my head, which i try to avoid, i lose about a tablespoon of fluid). for some reason they can never catch the actual act of the dye going into my sinus cavity. the neuro wont' see me until he knows where the leak is. that is what he said. end of story. so i'm stuck here teetering on the edge of insanity. searching for answers, alternate theories...

the bottom line is that i CANNOT UNDERSTAND how after 10 and a half years of living almost symptom free, all of a sudden out of the blue i get these other symptoms and BOOM i'm diagnosed with something that is connected to the leak. and they don't explore other possibilities. if i had gone to the doctor originally with these symptoms and never mentioned the leak. what would they have done? what diagnosis would i have gotten? does that make any sense at all? i feel like i have a prejudice against me. they won't listen to any other suggestion i have. it kind of pisses me off. what reason would i start getting these symptoms now? i'm 37 years old. this started when i was 26. what change happens in those years that causes one to start having wicked symptoms all of a sudden. i feel for you people who have had the pain and headaches and horrible symptoms since day one. but i'm so suspicious about this.

part of me hopes and prays that all my symptoms are benign. maybe i'm allergic to the cats i had for two months last may when all these symptoms started and i still have dander in my house (i actually started feeling like this as soon as i moved into this new house), maybe the fall leaves are molding and i'm sick from it. maybe i have TMJ. maybe i have such bad anxiety i'm depersonalizing, derealizing and disconnecting. i just don't know anymore.

any objective open opinions?
nature's finest flower
User ID: 318855
United States
11/07/2007 03:26 AM
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Re: need medical opinions (anyone's opinion) about rare condition.
Bless you Insomnia.

I have no good advice to give relating to your particular issues.

If I were in your shoes I would turn to God's Green Herb.

Mary Jane.

And puff down on a regular basis to soothe those symptoms.
Anonymous Coward
User ID: 322913
Italy
11/07/2007 03:49 AM
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Re: need medical opinions (anyone's opinion) about rare condition.
Try candling your ears to clean our your eustachian tubes, and see what happens.

It's non-invasive, painfree and costs little. You can find the ear candles in a health food store,

Here's a video on how to go about it. It's really easy and could fix at least one of your problems.


[link to www.youtube.com]
Anonymous Coward
User ID: 322913
Italy
11/07/2007 03:54 AM
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Re: need medical opinions (anyone's opinion) about rare condition.
I didn't watch the whole video before I posted it, and I can't believe they used paper plates as a shield!! LoL

I use the tin foil disposable kind that you can poke a hole in with a pair of scissors.
Anonymous Coward
User ID: 322919
India
11/07/2007 04:27 AM
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Re: need medical opinions (anyone's opinion) about rare condition.
stop eating MSG(research it's various names), stop eating diacetyl/diacetate, and then lose all the personal fumigants, from perfume/cologne/hairspray/deodorant to room fresheners, carpet sprinkles, and from your laundry and bedding remove fabric softener, dryer sheets, perfumed detergent, etc. From there do your blood pressure, namely stop eating all salt, including salt already added to processed food. Upper bp number can be stress but not the bottom one; bottom one is salt or other fluid retention.

get tested for allergy. if you already had a blood test see if the 'eosinophils' are elevated.


only after you've done all that should you cop-out to some BS psychological/stress explanation.
Anonymous Coward
User ID: 322930
United States
11/07/2007 04:36 AM
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Re: need medical opinions (anyone's opinion) about rare condition.
OP, I am so sorry to hear about this. I hope you get better and they find a cure for this.flower Sending love and healing power your way. Have you had a second and third opinion?
Anonymous Coward
User ID: 289517
Australia
11/07/2007 04:50 AM
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Re: need medical opinions (anyone's opinion) about rare condition.
[link to www.earthclinic.com]

OP, I promise you, this Website will help; it not only changed our lives, it helped us conceive.

As others here said, stay away from processed food; its no good, poison, its really (so we discovered) no more healthy than eating cardboard.

SALT + FAT + SUGAR = processed food

We are what we eat; that truth.

The joy we feel now is inexplainable; finding the freedom to realise; we needed to take back 'our choices' - we were slaves to the marketing merry go round, our thinking was 'they said so, it must be true'.

Business like the food chains only care about one thing: sales.

The FDA are snakes; the basis of ALL medicines are HERBS -
if doctors gave us the truth, rather than pills, they'd become extinct; FDA spend millions to make millions.

Mega doses of Vitamin C for instance: cures cancer, as does RAW almonds, Cayenne Pepper - Google that gem of a herb, cures heart attacks - tumeric, for our blood and balances many hormonal conditions, MACA POWDER that's pure gold all rolled into one container (that's what helped us conceive), laughter cures depression, Sunlight each day, 1/2 hour, we need it for Vitamin D, Cholestral Drugs are KILLING people...Google "Stalin Drugs" (CoQ10 will cure any Cholestral, I recommend you read about it, as will FISH OIL - ssoooo necessary for us).


"May our food be our medicine, and medicine our food"

[link to www.earthclinic.com]

'let food be our medicine, and medicine our food'
Anonymous Coward
User ID: 320108
United States
11/07/2007 10:23 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
I'm sorry, but don't bother with "candling", it's a crock.

Clenching your jaw will cause many problems-there is an "over the counter" mouth guard you can purchase at many drug stores that may help that problem-sort of a poor-man's dental nightguard used for bruxism(teeth ginding)
Anonymous Coward
User ID: 321869
United States
11/07/2007 10:40 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
ouch

you need to see a Specialist

Fuck that Family Doctor Bullshit


You need an Ear Nose and Throat Doctor


Best way to find a really good one is through word of mouth (referral) --- ask around town for the best Ear Nose and Throat Doctor

ask everyone
Anonymous Coward
User ID: 321869
United States
11/07/2007 10:42 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
I had a very bad ear infection and went to several Family Doctors (General Physicians) and they didn't help shit

I asked around for the best Ear Nose and Throat Doctor and many told me the same guy

I went to him and he fixed my ear right away

It was a m a z i n g
Anonymous Coward
User ID: 306940
United States
11/07/2007 10:52 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
Dear OP,

Get to a specialist and get tested for MS. I know a gal where I work who had a host of symptoms - I don't know the details, but they seemed to all be about her head and ears. She also had vertigo. She was given like 11 operations in her inner ear when they finally discovered/realized she had MS. So all the surgeries she had were nowhere near the problem, plus they left her deaf in one ear!

MS is not a good thing to have, but getting the right diagnosis is the place to start. You should not agree to more surgery until it is known FOR CERTAIN what the condition is that you may have.

So far it sounds like they've treated the symptoms with surgery. Its like having brain surgery for a headache. Doesn't make sense.

Good luck OP! I hope you don't have MS or anything serious and that you find relief SOON!
Anonymous Coward
User ID: 323180
United States
11/07/2007 10:55 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
DO all the physical things, yes, but also explore this avenue:

[link to www.emofree.com]

bless you
wonbyOne

User ID: 165715
United States
11/07/2007 10:56 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
CSF leaks are very unusual from my experience.

If you want to try natural, try chickweed or feverfew (also a good stress buster) for the ears and sinuses.

I like alfalfa and kelp for the daily vitamin content we all need - - if you don't take some supplement for vitamins and minerals, you should.

Lots of B complex for your nervous system/stress.

Best wishes and my prayers for your health, Insomnia.

hf
half fast
User ID: 323242
United States
11/07/2007 11:00 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
You probably have TMJ. You clench your teeth so much, you cracked a tooth. The root penetrated the sinus membrane and perforated the sinus cavity.You now have a fissure (apical)The drainage is not cerebral spinal fluid,but thinned mucus.Did neuro do analysis of protein in fluid.?Go to periodontist and remove root.Have bone augmentation to seal perforation and take augmentin for 3 weeks.Don't ask how I know,just check it out.You probably have a lump feeling in throat and can't seem to clear it, but did not mention it.
half fast
User ID: 323242
United States
11/07/2007 11:00 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
You probably have TMJ. You clench your teeth so much, you cracked a tooth. The root penetrated the sinus membrane and perforated the sinus cavity.You now have a fissure (apical)The drainage is not cerebral spinal fluid,but thinned mucus.Did neuro do analysis of protein in fluid.?Go to periodontist and remove root.Have bone augmentation to seal perforation and take augmentin for 3 weeks.Don't ask how I know,just check it out.You probably have a lump feeling in throat and can't seem to clear it, but did not mention it.
Anonymous Coward
User ID: 321869
United States
11/07/2007 11:01 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
my instincts tell me to tell you to get some sun light

close your eyes and look at the sun

you'll see red inside your eyes

do it for 5 minutes per day
Anonymous Coward
User ID: 306940
United States
11/07/2007 11:02 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
[link to www.mult-sclerosis.org]

i know you said you have grave's disease, but take a look at the page above and see if your symptoms match the descriptions.

good luck!
Anonymous Coward
User ID: 306940
United States
11/07/2007 11:07 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
Insomnia, while you're figuring out what's wrong, can you ask your doctor for a sedative to help with the anxiety? I was on valium for awhile pre-surgery to help me through the pain times. Valium helps with anxiety - especially the kind where you anticipate pain and feel fear. Valium can also help you sleep. But every drug works differently on different people. Just a suggestion to help you through the rough times.

I'm interested in natural healing, but sometimes meds can be such a blessing.
Anonymous Coward
User ID: 247140
United States
11/07/2007 11:07 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
Good advice guys... keep it coming.


I'm sorry, I don't have much of an idea about what could be causing this or what you can do, Insomnia...


I will pray for you... blessings...


:1rose1:
Anonymous Coward
User ID: 321869
United States
11/07/2007 11:11 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
You probably have TMJ. You clench your teeth so much, you cracked a tooth. The root penetrated the sinus membrane and perforated the sinus cavity.You now have a fissure (apical)The drainage is not cerebral spinal fluid,but thinned mucus.Did neuro do analysis of protein in fluid.?Go to periodontist and remove root.Have bone augmentation to seal perforation and take augmentin for 3 weeks.Don't ask how I know,just check it out.You probably have a lump feeling in throat and can't seem to clear it, but did not mention it.
 Quoting: half fast 323242



sounds good

look into that, insomnia
the Questeon ?
User ID: 255024
United States
11/07/2007 11:21 PM
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poor lass, I know there is an answer for you, and I pray that you actions will guide you right to it now... amen
Anonymous Coward
User ID: 323262
United States
11/07/2007 11:50 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
I had impacted wisdom teeth and had to have them surgically removed. I had many of the same symptoms before that was done. No problems since. Just another thought to add to the list.
Anonymous Coward
User ID: 309819
United States
11/07/2007 11:59 PM
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Re: need medical opinions (anyone's opinion) about rare condition.
You probably have TMJ. You clench your teeth so much, you cracked a tooth. The root penetrated the sinus membrane and perforated the sinus cavity.You now have a fissure (apical)The drainage is not cerebral spinal fluid,but thinned mucus.Did neuro do analysis of protein in fluid.?Go to periodontist and remove root.Have bone augmentation to seal perforation and take augmentin for 3 weeks.Don't ask how I know,just check it out.You probably have a lump feeling in throat and can't seem to clear it, but did not mention it.
 Quoting: half fast 323242



this is very likely the correct answer
TexasT
User ID: 305437
United States
11/08/2007 12:15 AM
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Re: need medical opinions (anyone's opinion) about rare condition.
I agree with several posters. Try going to an ear, nose and throat specialist.

Allergies can do freaky things. I am just getting over a sinus infection that started with me feeling pressure on my ear drum and I felt like my skull was going to implode.

It seems that the infections and pressures are getting worse.

Try the en&t specialist and then go from there.

Take care.
Anonymous Coward
User ID: 186317
Costa Rica
11/08/2007 12:18 AM
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Re: need medical opinions (anyone's opinion) about rare condition.
may be a bone infection. I had this.. take a drug called Lincolnton. injectable once a day for 3 days.
Anonymous Coward
User ID: 323282
United States
11/08/2007 12:27 AM
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Re: need medical opinions (anyone's opinion) about rare condition.
You could have systemic candida infection.
Anonymous Coward
User ID: 319640
United States
11/08/2007 12:38 AM
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Re: need medical opinions (anyone's opinion) about rare condition.
i have ear pressure and pain (doctor says my ears look clear so no infection), sinus pressure (mostly happens in the bridge of my nose it's almost like my eyes feel like they want to cross - again no obvious infection) and sometimes double vision. plus i get headaches and neck aches.

11 years ago i noticed alot of clear fluid coming out of my nose and was told it was the csf fluid around my brain leaking through a hole in my skull into my sinuses. i had surgery for it but it didnt work. i still have it and for the last 10.5 years my only symptoms have been clear fluid draining from my nose intermittently throughout the year. nothing else. all these symptoms are new and very sudden. i have noticed no increase in drainage.

i went to my doctor today (my real family doctor, not mediclinic doctors that are a dime a dozen in canada with our universal healthcare, you can just walk into a clinic and see a doctor for 'free').

my doctor is concerned. i cried and told him my quality of life is very bad. i get nauseated sometimes. i have severe anxiety.

it's very easy to see a doctor and present a history of a csf leak. and be told your symptoms are very obvious to a csf leak/inracranial hypo/hypertension. basically i'm a textbook case.

but.

there are other problems that might be factoring in on my symptoms.

one of them is that the extreme stress of my symptoms and general FREAKING OUT thinking all the fluid is going to drain out of my brain and kill me is causing great anxiety. when i go to bed at night, and that's not often because i have severe insomnia from anxiety, i clench my teeth so hard.. when i wake up the next day my teeth hurt, my gums hurt, my jaw hurts. my neck hurts. i have a headache in the back of my head. it's easily relieved by 500mg tylenol and 200mg advil. when the headache disappears so do the sore teeth and gums. that is the only headache i ever really get.

could this teeth clenching be causing my ear symptoms? or a csf leak, intracranial hypo/hypertension? in two weeks one doctor said he saw fluid in my middle ear. another doctor said he saw a plugged eustachian tube from wax build up. my doctor today said my ears were clear. all i know is they hurt and are itchy and feel pressurized. i noticed that clenching your teeth can cause ear pressure and pain because your ears are so close to your jaw.

my eyes. i have graves disease. which can cause your eyes to bulge. so i have seen a opthamologist. when these symptoms first started. the double vision and dizzyness and pressure. i coincidentally had a followup with the doctor. so luckily i was able to get eye testing and eye pressure readings.

all were normal. so there is nothing technically pushing my eyes out. but i feel this pressure. i have alot of clear mucous drainage and my nose feels blocked alot. i blow it constantly and i have allergies to mold. i was tested years ago. could my symptoms be caused by allergies, chronic sinusitus, or a csf leak or intracranial hypo/hypertension?

sometimes i feel like my head is floating. the vertigo. which i'm sure has something to do with my ears being under pressure. i get nauseated but i can't say if it's from the vertigo. or from stress.

all i know is when i take a double dose of clonazepam all i'm left with is sore ears and that spacey feeling behind the bridge of my nose. but the nausea is gone. the stress is gone.

i know this is a long post. but i need opinions. i can't see my neurosurgeon until he 'finds the location of the leak' and i've had ct scans, mris, and they can NEVER pinpoint the leak. my nose fills up over a few days (i don't always leak every day, it's like it collects and then when i tip my head, which i try to avoid, i lose about a tablespoon of fluid). for some reason they can never catch the actual act of the dye going into my sinus cavity. the neuro wont' see me until he knows where the leak is. that is what he said. end of story. so i'm stuck here teetering on the edge of insanity. searching for answers, alternate theories...

the bottom line is that i CANNOT UNDERSTAND how after 10 and a half years of living almost symptom free, all of a sudden out of the blue i get these other symptoms and BOOM i'm diagnosed with something that is connected to the leak. and they don't explore other possibilities. if i had gone to the doctor originally with these symptoms and never mentioned the leak. what would they have done? what diagnosis would i have gotten? does that make any sense at all? i feel like i have a prejudice against me. they won't listen to any other suggestion i have. it kind of pisses me off. what reason would i start getting these symptoms now? i'm 37 years old. this started when i was 26. what change happens in those years that causes one to start having wicked symptoms all of a sudden. i feel for you people who have had the pain and headaches and horrible symptoms since day one. but i'm so suspicious about this.

part of me hopes and prays that all my symptoms are benign. maybe i'm allergic to the cats i had for two months last may when all these symptoms started and i still have dander in my house (i actually started feeling like this as soon as i moved into this new house), maybe the fall leaves are molding and i'm sick from it. maybe i have TMJ. maybe i have such bad anxiety i'm depersonalizing, derealizing and disconnecting. i just don't know anymore.

any objective open opinions?
 Quoting: Insomnia
You're probably correct about the TMJ. If you're grinding your teeth at night the symptoms you mentioned are very likely coming from this activity while you're sleeping. You need to see a good dentist. He/she may recommend a night guard. You don't need more problems by wearing down your teeth.

Always get a second even a third opinion. Doesn't hurt and could help with some of your anxiety. Personally, I'm sick of medical doctors. Have you considered some holoistic care? I don't mean crystals and the such, but rather an acupuncturist or therapist to help with relaxation techniques, etc. Many MD's are now incorporating holoistic medicine into their practice.

Going to a doctor can be like going to a garage to have your car repaired. Mention something like "brakes" and the focus will be on brakes....and only brakes. When I go to have my eyes examined for new glasses, I tell the doctor I lost my glasses. I got tired of them giving me nearly the same new prescription from my old lenses. Now they start off from the beginning and I get lenses I can see with!!

I wish I could truly help you through all this, as I can relate to much of what you're going through. I will keep you in my thoughts and prayers. I wouldn't know how to cope sometimes if it weren't for someone to talk to and lean on. Call on friends.

Remember to take life ONE DAY AT A TIME literally. Don't forget you're spiritual side. It's not gonna be easy, but you can learn to cope and learn your way through life's experiences. (I'm still working on it, but I'm doing better.)

You'll be okay. You're intelligent, on top of the matter and talking about it here on GLP. Don't worry. Be happy.
Blessings to you and yours.

Oh, and amidst all the doom, remember something wonderful is coming. You're here for a reason. You're part of the plan. Take care. :)
Anonymous Coward
User ID: 227611
United States
11/08/2007 12:44 AM
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Re: need medical opinions (anyone's opinion) about rare condition.
I really don't know, but, at minimum, I agree with others saying to go to an ear, nose, and throat specialist or a dentist. Get your teeth checked. If anything, you *know* you clench your teeth. See about getting a mouthguard.





GLP