Rare Diseases

[Guest guest]

Nope, they don't know what causes the Mollaret's or

the eye problem. With the eyes, it can be heriditary

but only from mother to son. With the Mollaret's, it's

so rare that few studies have been done on it. I have

actually talked to two other people with it. One is in

Wyoming and the other in Michigan. It was " good " to

talk to someone who has actually been going through

the same things. Because so little is known about it,

when we talk to our doctors about " after-effects " we

are told it is " all in our head. " (typical huh?) Yet

when we talk to each other we hear ourselves saying

the same things! Some after effects are: ringing in

the ears, memory loss, mood swings, depression, a

feeling of veritigo, fatigue, CONSTANT headaches, etc.

I finally went through a brain injury clinic and they

agreed that it WAS all in my head..but it wasn't my

imagination. The thing that made me the maddest was

when they first suspected this, they contacted the

Mayo Clinic. The ONLY dr. that has done any extensive

research had been on their staff there but has since

retired. They agreed to see me..until..they found out

I didn't have insurance. Then they said I wasn't

" unique " ..hmmmmm. They did say that if I could pay

$5000 in advance, I could come up there. Told them I

would just bend over and pull it out of my b**t as

that was the only chance I had of gettting that kind

of money! I ended up going to Washington University in

St. Louis where they worried about the patient first

and the money later. Again, because it is so rare,

they don't know what causes it or how to treat it. So

basically, you don't get treatment. The only thing

that can " treat " is when you have active meningitis

and then all they do is give you pain meds. I haven't

had a day without a headache since June 1998. Only

thing I can take is OTC meds as any narcotic would be

addictive. The one " good " thing that did come out of

this, is I did manage to get Social Security after

having to totally explain to them what this condition

is. It's not much but it helps. Previously I had been

a paralegal pulling down pretty good money.

So now, I spend my time on the computer Usually

doing adoptee related searches and genealogy. Also am

busy raising my three year old grandson whom we

legally adopted after getting him at ten months. Now

THAT keeps you busy! Love it though (at least most of

the time.)

Terri B.

=====

searching for Deborah

dob 1/14/57 in nna, Fl

Relinquished in Chicago, 1961

brother and 5 other siblings searching

Half-sib found 1-16-00!

__________________________________________________

[Guest guest]

Yes, it bites when they say it is all in your head !!! it's a shame they don't know much about the diseases ( I'm glad you found someone to talk to about them tho, that does have to help ya some ) Keep us posted and take care of yourself !!!

{{{ Worried Hugs }}}

..· ´¨¨)) -:¦:-

¸.·´ .·´¨¨))

((¸¸.·´ ..·´ -:¦:- -):-

-:¦:- (( °º¤

«:¨`v´¨)::» °..··..*.. ·· ..°

*..·°-:¦::- `v´*Helen *-:¦:- °·..*

* °.. ·· ..*.. ·· ..° *..

Nope, they don't know what causes the Mollaret's orthe eye problem. With the eyes, it can be heriditarybut only from mother to son. With the Mollaret's, it'sso rare that few studies have been done on it. I haveactually talked to two other people with it. One is inWyoming and the other in Michigan. It was "good" totalk to someone who has actually been going throughthe same things. Because so little is known about it,when we talk to our doctors about "after-effects" weare told it is "all in our head." (typical huh?) Yetwhen we talk to each other we hear ourselves sayingthe same things! Some after effects are: ringing inthe ears, memory loss, mood swings, depression, afeeling of veritigo, fatigue, CONSTANT headaches, etc.I finally went through a brain injury clinic and theyagreed that it WAS all in my head..but it wasn't myimagination. The thing that made me the maddest waswhen they first suspected this, they contacted theMayo Clinic. The ONLY dr. that has done any extensiveresearch had been on their staff there but has sinceretired. They agreed to see me..until..they found outI didn't have insurance. Then they said I wasn't"unique"..hmmmmm. They did say that if I could pay$5000 in advance, I could come up there. Told them Iwould just bend over and pull it out of my b**t asthat was the only chance I had of gettting that kindof money! I ended up going to Washington University inSt. Louis where they worried about the patient firstand the money later. Again, because it is so rare,they don't know what causes it or how to treat it. Sobasically, you don't get treatment. The only thingthat can "treat" is when you have active meningitisand then all they do is give you pain meds. I haven'thad a day without a headache since June 1998. Onlything I can take is OTC meds as any narcotic would beaddictive. The one "good" thing that did come out ofthis, is I did manage to get Social Security afterhaving to totally explain to them what this conditionis. It's not much but it helps. Previously I had beena paralegal pulling down pretty good money.So now, I spend my time on the computer Usuallydoing adoptee related searches and genealogy. Also ambusy raising my three year old grandson whom welegally adopted after getting him at ten months. NowTHAT keeps you busy! Love it though (at least most ofthe time.)Terri B.

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[Guest guest]

Rare DiseasesAlthough we tend to hear medical news and research about common diseases like Diabetes, MS, and Cancer, there are also over a thousand "rare"diseases that affect people everyday all around the world.

The National Organization for Rare Diseases (NORD) website is an amazing online resource that sheds light on these lesser-known, but equally destructive medicalconditions.Browse through NORD's "Rare Disease Database", an alphabetized index with information on over 1,150 rare diseases.

Students, patients, and friends and family can learn about esoteric ailments such as " Oliver Syndrome", "Giardiasis", and "Jumping Frenchmen of Maine", as well as find helpful resources for treatment and research.http://redirx.com/?0q9x