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20 Posts
Discussion Starter · #1 ·
i plan on bringing this up and the doctors office next week

but i thought id get soem advice from you guys as well

um a few questions i have

i just got diagnosed with lupus a week ago

first he said connective tissue disease,now he says lupus mabey even just skin envolment

my doctor said that he thinks my disease is in its easy stages

my question thought..thinking about my health history

some things from my past raise some questions with me
and leed me to believe that mabey its been lupus all along my whole life and they just never put every thing together

my mother has been an RN for 35 years

she has always been good at taking care of other strangers but not so good at taking care of her own daughter.

she would always put off taking me to the doctors thinking she knew what they would do or say and give me some self help remedy

i guess it started in the 4th grade....i almost failed that year because i had missed so many days and unlike most kids i was actually SICK when i stayed out from school.never really serious but i always had a sore throat
or grades were okay but i was gonna fail on missing to many days alone.
so my mom took me to a doctor finally after the school princible said it would be a good idea to get a check up since i was in danger of failing school due to my health

everything as far as i remeber came back ok with the docs
so my mom took me to a dentist i remember...well some x rays showed i had a cyst in my gums..which he said could be related to my constant health problems.They removed it and i did start to feel better and i wasint as sick as i used to be.

when i was 11 years old i got really sick i had 1004 fever..sore throat caugh I was sick for a week aunt had to act like she was mom just to get me to the doctor.

turns out i had nomonia.

when im 13

i turn sickly ill again
this time i have white bumps all over my throat
throat is so swollen i cant eat or talk
high fever

i go to the doctor..they do some tests and they said i tested positive for
Mononucleosis and i ahd a pretty severe case
i get put on a high dose of steriods for two months im on bed rest too

after this around 14 i start getting uti....every week.
i would take meds it would get better than worse again
i even snuck to the doctors without my mom knowing it during school
to get treated for it
they tested me for std's everything came back normal..they told me i could have a hole in my urinary tract or mabey its something im eating

i contined to suffer from severe painfull uti untill i was 19 ,that left me crying in pain sitting on the toliet for hours with juggs of cold water pressed on my private area ( this helped releave the pain) begging and pleading for the pain to go away
i was a chronic uti tablets user the ones you get over the counter at cvs

at the age of 19 i got pregnant with my first daughter..suddenly the uti's just went way

all of this leads me to believe that mabey lupus has been the culprit all along

im new to this and don't know a whole lot about this disease

has anyone heard of lupus causing the things i talked about

im scared to bring all this uo to the doctor because i dont want him to think im crazy

7,800 Posts
Hello again Melissa :)

It is very possible that all those things could have been your first signs of lupus. Many people get a lot of infections - throat, pneumonia, UTIs and so on before diagnosis (and also sometimes during flares). Mononucleosis also seems to be pretty common in lupus sufferers. They are all things that should be mentioned to your rheumy as part of the bigger picture.

If your rheumy is a lupus specialist he will certainly not think you are crazy.

If you take a look here at this link of "alternative" lupus criteria, you will see that there are many things that might be linked.

this is the link to the ACR classification criteria


20 Posts
Discussion Starter · #3 ·
hello katherine :) thank you for the links
it helped me understand lupus better and also raised another thing to my attention

just two weeks ago i was outside and got bitten by mosquittos
my legs got so swollen where i was bitten
ten times the size they should be

it also reminded me of a time when i was younger that i got bitten and developed cellulitis my arm swelled up to the size of a soccer ball ( spelling? i so horrible at spelling)

anyway i plan on mentioning these things to the doctor next week
your right if the doctor is worth anything they wont think im crazy
and so what if he does..i guess i rather let him know then keep it to myself and regret it

7,566 Posts
Hi, honey bee, welcome to the site, I hope thjat your doc appt goes well next week.

Take care


4,968 Posts
Hi Honeybee and welcome to the board.

I wish you luck with your up coming appointment.

Please let us know how you make out.

1,999 Posts
Hi Honeybee,
Yes, your early history is very similar to what I went thru. I started to show lupus symptoms when I was 5. I missed so much in second grade that I was out nearly half the year. I managed to pass the tests, so got to go on to 3rd grade. It took 30 years to get a diagnosis of lupus.

If I was out in the sun on a summer day, I would spend the next few days very ill with fever, migraine and rash. I can't remember a time when I did not have headaches. I had several diagnoses thru the years, but none was the "right" one.

Hopefully with better testing means, there will be fewer stories like ours. People will be able to be diagnosed a lot sooner and treatment more direct.

9 Posts
hi, in my experience as a child i never had any health problems, infact i was unusually well. my mum put me with every kid in the neighbourhood who had measles or chicken pox, i never got anything. At 11 i started with migraine and that was it, 7 years later i was diagnosed, i work with kids and unfortunately i got chicken pox at 33!!! take care:):)
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