Re: PLEASE UPDATES

[Guest guest]

Thanks Terri, You sure do have your plate full...I can't find any sites on retinoskisis, but I did find a couple of sites on Mollaret's Meningitis... With the retinoskisis, are you able to see out of that eye??? Are you able to get around on your own??? You are a dear... Thanks for the info... I printed it out and will keep everyone in a folder, so when I'm not remembering very well, I can look it up ) There's always a way around Most things...

((( Special Hugs )))

Helen

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PANDORASBOX8

Hello group, I've been kind of quiet lately but since Helen is asking for updates....guress I better huh? I'm Terri, I'm 50 years old, mom to three adult children, mama to a grandson that we have legally adopted and grandma to 3 (soon to be four). I have Mollaret's Meningitis, which is also known as recurring aseptic meningitis. In non medical terms, I keep getting menintitis over and over again,five times so far. Also have retinoskisis which is a cyst in the eye. Both are very rare. The Mollaret's is VERY rare, less then 100 people have been diagnosed. Since it is so rare, there is no treatment, no cure and most doctors don't have a clue about it. It causes fatigue, vertigo, memory loss, constant headaches etc,etc. Some days I do quite fine, others....I am on Social Security due to this disability. Just had my first review and haven't heard anything yet.

So, that's me. Next! 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-

[Guest guest]

Hello group, I've been kind of quiet lately but since Helen is asking for updates....guress I better huh? I'm Terri, I'm 50 years old, mom to three adult children, mama to a grandson that we have legally adopted and grandma to 3 (soon to be four). I have Mollaret's Meningitis, which is also known as recurring aseptic meningitis. In non medical terms, I keep getting menintitis over and over again,five times so far. Also have retinoskisis which is a cyst in the eye. Both are very rare. The Mollaret's is VERY rare, less then 100 people have been diagnosed. Since it is so rare, there is no treatment, no cure and most doctors don't have a clue about it. It causes fatigue, vertigo, memory loss, constant headaches etc,etc. Some days I do quite fine, others....I am on Social Security due to this disability. Just had my first review and haven't heard anything yet.

So, that's me. Next! Terri B.searching for Deborah dob 1/14/57 in nna, FlRelinquished in Chicago, 1961brother and 5 other siblings searchingHalf-sib found 1-16-00!

[Guest guest]

Okay, here goes on my listing of ailments, not that I think they define me in any way shape or form LOL. Allergies to beef, pork, gelatin, dairy, caramel color, cocoa, perfumes, colognes, horse hair, grasses, oak, ragweed, dog, house dust and ant bites. Osteoarthritis, osteopenia aka near-osteoporosis, lupus SLE, asthma, TMJ, weak thumb/wrist joints and migraines. PTSD and recurrent depression. I had a hysterectomy which involved the removal of y uterus, cervix and left Fallopian tube due to a Fallopian cyst and uterine fibroids. I also had surgery for pyloric stenosis as a baby, surgery to repair my left eardrum and widen my left Eustachian tube and surgery to remove an extra bone in my left arch's ligament. I had 2 successful pregnancies with births on 6/27/88 (boy) and 6/7/93 (girl), both of whom have since been adopted, the boy my my father and stepmother and the girl by a teacher at her school. I think that is everything. LOL.

T. aka Pegasus

ID pegasustom

MSN Messenger pegasusnumber1@...

ICQ 25284229

-- PLEASE UPDATES

PLEASE Everyone, Could you update what is wrong with you in illnesses and or as caregivers, so the folks ( like myself ) ) can remember what is going on... Any of the new folks this year, may want to know also... This time I will write them ALL down or print them out for myself, I PROMISE ) !!! THANKS---LOVE Helen

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[Guest guest]

Oh Helen,

So as you may know, I can't wait for the flight over two days!

I will go for about 3-4 weeks to a teachings hospital in Colombia.

There they may do a major surgery, because of the Endometrioma.

Because of the low immune system, I've got the flu last week and it

is hard to beat it.

I will send an update when I'm up to it.

Huge hugs,

Xiomi

[Guest guest]

Hi.

I am high functioning autistic. It depends on who you ask whether I have OCD

and ADHD too or whether both of those come under the autism label. I have a

lot of symptoms that keep recurring and have done since I was twelve years

old or thereabouts and the only possibly sensible answer that any doctor has

come up with is that I probably have Chronic Fatigue Syndrome. At the

moment, I am studying at university in my first year of a double major in

Computer Science and Internet Computing and the work so far is easy and fun

but my health is quite terrible at the moment due to travelling to and from

uni and carrying a bag of textbooks with me all day. I have a dentist

appointment tomorrow morning because I chipped my capped front teeth and

this will be the first time in probably about ten years that I saw a

dentist. Last time was when I was having my orthodontic work done. I still

cannot close my lips without effort and still have my top teeth sticking out

a lot more than the bottom ones despite years of braces and retainers but I

refused to have surgery on my jaw because I think that would be horrid and I

do not care if people think I look ugly. Now that I am an adult, hardly

anybody comments on my teeth anyway.

I am going to see a naturopath to try finding answers about the

fatigue/pain/rest of it all, because I have pretty much lost hope of getting

sense out of any mainstream doctors about it. They all seem to give

different pills that do not fix the problem and have nasty side effects and

some of them make me quite ill. I was on fluvoxamine for " major depression "

and " OCD " since late last year but the dosage was sharply increased last

week and I ended up with something called Serotonin Syndrome which is less

than pleasant. That caused me to miss quite a bit of uni work and I was very

ill for a few days. Consequently, I am not on fluvoxamine anymore and back

to no pills except Phenergan at night so that I sleep enough to get up and

go to uni in the morning. I have a home help lady called Penny who comes

twice a week for two hours and she is very nice and helpful. She is helping

me make a schedule of chores so that I can fit everything in with my uni

work and not forget to do things.

The man at the health food store who is a naturopath but retired said that

some of my symptoms are very likely gluten intolerance, but I already know

that I get sick from eating gluten, dairy produce and red meats (and other

things but less so than those.. onions and tomato and garlic and spicy foods

are really bad). I weigh 43kg but I eat a lot and I drink supplement drinks

and it is funny how some people at uni have asked me if I am anorexic but I

am usually walking around eating food from the refectory or vending

machines. I hope I will find an answer to my health problems sooner or later

but I have no expectation of that, since it has been enough years with no

answers so far. Mainly I just hope that my health does not prevent me from

doing my degree because that is something I have wanted for a long long time

to do and it would be horrid to have it wrecked by a stupid nameless

illness.

I have no partner and no children and I live alone with my computers. I like

it better that way as there is less sensory overload and less communication

to be done (and those things are difficult for me in person but easier

online hence why I hardly ever talk to people on the phone or in person but

I socialise a bit online).

That is all I can think of now.

CZ

_________________________________________________________

[Guest guest]

Hi CZ... You too have a lot to deal with...Don't you also have acid reflux??? or am I remembering wrong... I know you have a lot of trouble with your poor stomach...I'm glad you like penny, is she getting things to where you can get on a good schedule??? Are Dr's. capable of distinguising autism from OCD and

ADHD ??? Like with blood work or something??? EWWWWWWW the dentist ( Hope they can fix it the first time for ya... How did you chip it??? Did you fall??? I hope not...

Do you live in England??? Do you go to UNI all year??? or do you take a summer break???

Thanks for all the info ) It Really does help me to know each one better...and I did save and print it for myself )

((( Special No Hurting Dentist Hugs )))

Helen

Hi.

I am high functioning autistic. It depends on who you ask whether I have OCD

and ADHD too or whether both of those come under the autism label. I have a

lot of symptoms that keep recurring and have done since I was twelve years

old or thereabouts and the only possibly sensible answer that any doctor has

come up with is that I probably have Chronic Fatigue Syndrome. At the

moment, I am studying at university in my first year of a double major in

Computer Science and Internet Computing and the work so far is easy and fun

but my health is quite terrible at the moment due to travelling to and from

uni and carrying a bag of textbooks with me all day. I have a dentist

appointment tomorrow morning because I chipped my capped front teeth and

this will be the first time in probably about ten years that I saw a

dentist. Last time was when I was having my orthodontic work done. I still

cannot close my lips without effort and still have my top teeth sticking out

a lot more than the bottom ones despite years of braces and retainers but I

refused to have surgery on my jaw because I think that would be horrid and I

do not care if people think I look ugly. Now that I am an adult, hardly

anybody comments on my teeth anyway.

I am going to see a naturopath to try finding answers about the

fatigue/pain/rest of it all, because I have pretty much lost hope of getting

sense out of any mainstream doctors about it. They all seem to give

different pills that do not fix the problem and have nasty side effects and

some of them make me quite ill. I was on fluvoxamine for "major depression"

and "OCD" since late last year but the dosage was sharply increased last

week and I ended up with something called Serotonin Syndrome which is less

than pleasant. That caused me to miss quite a bit of uni work and I was very

ill for a few days. Consequently, I am not on fluvoxamine anymore and back

to no pills except Phenergan at night so that I sleep enough to get up and

go to uni in the morning. I have a home help lady called Penny who comes

twice a week for two hours and she is very nice and helpful. She is helping

me make a schedule of chores so that I can fit everything in with my uni

work and not forget to do things.

The man at the health food store who is a naturopath but retired said that

some of my symptoms are very likely gluten intolerance, but I already know

that I get sick from eating gluten, dairy produce and red meats (and other

things but less so than those.. onions and tomato and garlic and spicy foods

are really bad). I weigh 43kg but I eat a lot and I drink supplement drinks

and it is funny how some people at uni have asked me if I am anorexic but I

am usually walking around eating food from the refectory or vending

machines. I hope I will find an answer to my health problems sooner or later

but I have no expectation of that, since it has been enough years with no

answers so far. Mainly I just hope that my health does not prevent me from

doing my degree because that is something I have wanted for a long long time

to do and it would be horrid to have it wrecked by a stupid nameless

illness.

I have no partner and no children and I live alone with my computers. I like

it better that way as there is less sensory overload and less communication

to be done (and those things are difficult for me in person but easier

online hence why I hardly ever talk to people on the phone or in person but

I socialise a bit online).

That is all I can think of now.

CZ

[Guest guest]

Hi Helen.

> Hi CZ... You too have a lot to deal with...Don't you also have acid

reflux???

Yes but only when I eat certain foods or lie down too soon after eating.

> or am I remembering wrong...

It just got called " reflux " .

> I know you have a lot of trouble with your poor

> stomach...I'm glad you like penny, is she getting things to where you can

get

> on a good schedule???

I hope it will be soon. Working on it.

> Are Dr's. capable of distinguising autism from OCD and

> ADHD ??? Like with blood work or something???

No. Most doctors do not know very much about high functioning autism and

Asperger's Syndrome (some people say those two are varying severities of the

same thing and the definitions get argued about). I am not aware of blood

tests or other tests that can show OCD or ADHD or autism.

> EWWWWWWW the dentist ( Hope

> they can fix it the first time for ya... How did you chip it??? Did you

> fall??? I hope not...

I broke my teeth years ago and I chipped the caps by biting food. The

dentist was alright and he said I brush my teeth very well and he cleaned

and scaled them or whatever it is called. He told me that my gums are

receding and that I should brush them a bit differently but that they will

not grow back and he gave me a quote for the caps and a retainer which I

will have to discuss with my health fund and make an appointment for another

time.

> Do you live in England???

No. Australia. I just selected England in the details when I got this

email address because I did not want anybody to guess my password from my

details or anything. I did not realise it would give me .co.uk until it

already did.

> Do you go to UNI all year???

There is semester break and summer break but I am not sure of the dates. I

am enjoying uni so far, except that I feel ill most of the time because of

going there every day except one. It got interesting yesterday and today

when I started to learn HTML and java. I do not like java (but I am not any

good at it yet) and neither does my tutor but he said he has to teach it

because it is in the syllabus. I commented that it is ugly and he said he

agrees and that C is nice. I could not understand the stuff in class because

I like to know how things work then I can understand them (same with human

languages it would be hard to speak a language if you do not know what the

words mean) so the tutor stayed back and explained it relating to C and then

it made more sense. He also helped me with a problem that I was having with

file pointers in a C program last year and that had nothing to do with the

course syllabus so he is a nice guy.

> Thanks for all the info ) It Really does help me to know each one

> better...and I did save and print it for myself )

I forget the details of people on this list but I like to read how people

are going and when I read their mail I usually remember who it is. I like

seeing when things are going well for people like wrote about Don

and I remember her posts from since I joined about Don and I liked reading

that he is doing well.

CZ

_________________________________________________________

[Guest guest]

Sorry that my update is late... I have been having a lot of problems with my fibro and with my EX... so I haven't felt like being on the PC very much but I have been reading all the posts.

OK, so I will repost my info in case anyone here hasn't read it before.

My name is and I live in Finland. I am 38 years old and the mother of 2 children, ages 4 & 6. I was diagnosed in October of 1997 with panic attacks, In March of 1998 chronic depression, in February of 2000 Fibromyalgia and July of 2000 Diabetes; my diabetes is controlled by 2 tablets taken 2 times a day. My doctor has also prescribed an anti-depressant (1x daily), 5 mg valium (2 x daily) and another anti-depressant/pain tablet taken about 3 to 4 hours before I go to bed. These medications I have taken for several years now regularly with quite good results.

Recently I had a gastroscopy and I found out that I have gastroesophageal reflux disease, or GERD and it has been untreated for so long that I have developed a condition known as esophagitis the gastroscopy (endroscopy) showed that the lining of my esophagus is severely inflamed and irritated by stomach acid. So now I have to take some kind of med called SOMAC for 1½ months and then after that I will have to continue taking the same medicine, but a lower dosage, every day to prevent the same thing from occurring again.

In the last 2 years I have been losing muscle strength. In February of 2000 when I was diagnosed with the fibromyalgia my muscle strength was tested with some kind of meter that I had to squeeze. In Feb of 2000 it registered 21kg left hand & 19kg right hand but in November of 2000 when I was tested again the results were 9kg left hand and only 8kg right hand and this past November the reading have dropped even more. I am right-handed. Also this is a list of other symptoms that I have: vision problems, tingling sensations, especially in my legs, that come & go in small patches in different places on my legs. I am always extremely tired all the time even though I have slept a good 8 hours, I must lay down to rest or to take a nap daily. I am having a funny sensation, especially in my hands & arms, like there are small ants crawling under my skin. I experience light-headedness quite often & my brain functions slower than before. I can no longer write a letter by hand because after 2 sentences my hand becomes stiff and I can’t move the pen anymore. When I go out for a walk, after just a few minutes my legs, especially the calves, become very sore & the muscles feel so tight. Also my lower back muscles are always tired and achy so that sometimes standing & washing dishes is very difficult. It is difficult for me to climb stairs because it feels like so much work to get my leg to rise up to the next step. My fingers & hands have become very klutzy and I am always dropping things. I can’t hold a book or even the newspaper slightly elevated in my hands because my arms & hands become so tired & sore that I must keep the paper or book on the table to read it. My fingers are increasingly more stiff and I am even having trouble getting them to obey sometimes when I pluck away at the computer keyboard. I have a very difficult time doing any thing that requires my arms to be in a raised position, like washing my hair, hanging curtains, washing windows, etc. I must lower my arms repeatedly until I slowly get whatever I am doing finished. I have muscular tiredness often also in my facial & jaw muscles and sometimes it feels hard to swallow, especially if I am physically very tired. I tire too easily from simple housework or a short slow paced walk. I have very weak neck muscles that sometimes it feels very difficult to “carry my own head” and I have lots of headaches and pressure pain in & behind my eyes and forehead. I have other symptoms also but I will not continue to list them all right now.... *smile* ..... I think I have rambled about them too much already!!

I have had 2 spinal taps and a complete MRI and they showed no abnormalities. In March of 2001 I had to go to a special lab that did an ISOMETRIC (my right hand) Tolerance test(don't know if that is the correct translation). The blood tubes were flown by special currier to a University Hospital in Southern Finland and after 3 weeks the results were back showing definite abnormalities, which in a letter from my neurologist said indicated a muscle tissue metabolic disorder, so she ordered a muscle biopsy. The biopsy was performed in may of 2001. Then this past October I was sent to the main hospital in Helsinki where the only MD specialist in Finland checked me out & ordered another biopsy. I just got all the results last week and it was a very depressing phone call because the doctor said he still cannot explain my loss of muscle strength. So I have to use a walker to get around outside and when I go shopping, etc...ALL the symptoms continue but I remain undiagnosed.

I have an appointment on March 20th to see my Physio-doctor... By the way, what is the proper term in English for "physio-doctor"? The doctor that specializes in muscular problems & diseases...??

Helen sent me a lot of great links about Chronic Myofascial Pain Syndrome and after doing a lot of reading I see that it is very possible that I have this illness along with the fibromyalgia. My neurologist wouldn't listen to me about this and so I hope that I can get my phsio-doctor to listen or at least get me an appointment with the Rheumatism clinic where I was diagnosed with the Fibro, those doctors there MUST know about CMPS!!

So that's all about me & my illnesses up to now.... thanks for listening.

Hugs,

in Finland