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Old 01-24-2003, 08:41 PM   #1
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Join Date: Jan 2003
Location: Indianapolis, IN, USA
Posts: 3
KellyinIndy HB User
Angry Not diagnosed yet

Hello to everybody. My name is Kelly and I'm 27 years old. I need to do a little venting because I'm not getting any answers!! I recently went to have my eye looked at by my GP because it was red & swollen (it had been happening on and off for over 2years). He refered me to an Optomologist who said is was inflamed and that something else was causing it. They asked if RA or Lupus runs in my family. The only person I know of is my 1/2 sister has RA. They ran some blood test and my ANA came back positive 1:80, don't know the pattern. They also ran a whole bunch of other tests. They only ones that came back abnormal was my VDRL, well this one I've been getting a false positive on for about 9 years, which the doctor at the time said I was just a fluke. Also, my sed rate was slightly elevated. My GP decided nothing was wrong without even speaking to me after my blood test came back so I made an appt on my own with a Rheumatoligist. I went and she asked all the typical questions, basically my symptoms are: Fatigue, The above mentioned blood tests, hair is falling out, hot flashes, achy joints and muscles (not swollen), extreme back pain (have had it since I can remember), red blotches that come and go on my face and super sensitive to sunlight. So the Rheumy re-ran some blood test because she said that my ANA is borderline and this time it came back 1:640. So all being said and done her response was let's wait and see if you get a low grade fever or start having any organ involvement.

I'm so frustrated! Sorry to have rambled so long, I just needed to vent.

I guess I need some advice if I should wait or if I should try to find another doctor (both GP & Rheumetologist).

Thank you all for reading my post.

 
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Old 01-25-2003, 05:38 PM   #2
Member
 
Join Date: Oct 2002
Location: va,usa
Posts: 57
shasha HB User
Smile

hi kelly,
welcome to the board this is a good place to vent. i know the frustration you are going through and im sorry for you. your story sounds similar to bonnie50 who i just wrote to . i dont know if your interested but i wrote to her what im going through. it might help. well good luck to you. keep us posted.
sha
also, if you type in lupus personal stories at [url="http://www.***********"]www.***********[/url] there are some very interesting stories

 
Old 01-27-2003, 09:20 AM   #3
Inactive
 
Join Date: May 2002
Location: Ohio
Posts: 222
Denise F HB User
Post

Sorry Kelly about your symptoms. But, believe it or
not you are lucky and your symptoms are mild. I know
it it hard and you want the Dr. to give you a magic
pill to fix it but it is much better to not push
for medication. Yes, you may be able to find a Dr.
who will put you on meds, but if you have no life
threatening conditions going on, it's better to stay
off the drugs. The type of drugs given for Lupus can
cause the same symptoms they are being given for. Your
body can be forced to go into remission but often
does not stay and it will take more and more drugs
to control it until you are in a round and round
fight and in the end you don't know if the damage
being done is from the Lupus or the drugs. Your
Dr. is good to be cautious. Does that mean there is
nothing you can do? No there are alot of things
you can do. 1. Read everything you can find in the
book store and online about Lupus. 2. Try to get
as healthy as possible. Dr. Weil has written about
various vitamins and herbs to take when one as
Lupus. 3. Try to find some kind of relaxation
techiques to use. There are relaxation tapes out
that are for overall health and I have one for Lupus.
Bio feed back and hypnosis could be used too.
4.Try cutting out Dairy products and limit meat.
Dairy has been known to aggravate some people with
Lupus. Eat fish high in omega 3, samon, sardines
are good. 5. Stay out of the sun whenever possible and
always wear sun screen. 6. Get plenty of rest. This
may be the hardest to do in our fast paced life but
it is very important with Lupus. Try to slow down
and delegate household chores to give yourself nap
time or meditation time. These will not give you
immediate results but they will give you a good shot
at getting your body to heal itself and have a long
lasting remission. It will be hard and frustrating
at times and ask for help with depression if you
need it . Your Dr. is trying to do his best by
just watching right now. Lupus is a strange disease
that can come and go for no apparent reason. People
have even been known to fall in love and remission
at the same time, so mental attitude can sure help.
Good luck to you and you can vent here anytime.

------------------

 
Old 01-28-2003, 07:04 PM   #4
Junior Member
 
Join Date: Dec 2002
Location: CALIFORNIA
Posts: 42
MAN WITH LUPUS HB User
Smile

Hi Kelly welcome

I would look into another Reumot Doc. ASAP you sound like you have Lupus the Red marks on your face is it across your nose cheek to cheek, fatiuge yes thats one, your eyes is also one it involves calcium build up it will mess with your vision. weird rash on your body it will make you scratch and leave little white scars behind, your bones will hurt & joints, your eating habbits may decrease, night sweats, Hair will fall out, your teeth will hurt, you will get canker sores on and under your toung. also Reanods Phenominom this effects your fingure nails and toe nails, The sun will effect some not all though just were sun block, weight loss be care full if you loose to much weight it could effect your kidneys, also Lupus Kidney his can also deelope if things arenot looked after. I have more I can tell you If you want. But first try a new Reumot Dr. get a CBC Blood test to check for Lupus. Once you get the right Dr. and get on the right MEDS for you if you have any of the other symptoms I mentioned they will calm down to a point. hope this helped

Good Luck

Sal
Quote:
Originally posted by KellyinIndy:
Hello to everybody. My name is Kelly and I'm 27 years old. I need to do a little venting because I'm not getting any answers!! I recently went to have my eye looked at by my GP because it was red & swollen (it had been happening on and off for over 2years). He refered me to an Optomologist who said is was inflamed and that something else was causing it. They asked if RA or Lupus runs in my family. The only person I know of is my 1/2 sister has RA. They ran some blood test and my ANA came back positive 1:80, don't know the pattern. They also ran a whole bunch of other tests. They only ones that came back abnormal was my VDRL, well this one I've been getting a false positive on for about 9 years, which the doctor at the time said I was just a fluke. Also, my sed rate was slightly elevated. My GP decided nothing was wrong without even speaking to me after my blood test came back so I made an appt on my own with a Rheumatoligist. I went and she asked all the typical questions, basically my symptoms are: Fatigue, The above mentioned blood tests, hair is falling out, hot flashes, achy joints and muscles (not swollen), extreme back pain (have had it since I can remember), red blotches that come and go on my face and super sensitive to sunlight. So the Rheumy re-ran some blood test because she said that my ANA is borderline and this time it came back 1:640. So all being said and done her response was let's wait and see if you get a low grade fever or start having any organ involvement.

I'm so frustrated! Sorry to have rambled so long, I just needed to vent.

I guess I need some advice if I should wait or if I should try to find another doctor (both GP & Rheumetologist).

Thank you all for reading my post.


------------------
PEREZ
__________________
PEREZ

 
Old 01-29-2003, 05:27 PM   #5
Senior Member
(female)
 
Join Date: Nov 2000
Posts: 182
Ann S HB User
Post

Kelly,
Yeah, stay off the meds if you can get along without them........but, I certainly wouldn't wait till there was organ involvement before you did anything further!!!!!!! Do some research (I listed some sites on the post for Bonnie "Lupus & Raynauds"). Also, what could it hurt to get another Rheumy opinion. Anyway, with another opinion and some research on your own, then you are better equipped to make your own choices. Good luck, Ann


p.s. do the research before seeing another Dr.

 
Old 01-31-2003, 09:05 PM   #6
Newbie
 
Join Date: Jan 2003
Location: Indianapolis, IN, USA
Posts: 3
KellyinIndy HB User
Smile

Thank you all so much for the replies. I still haven't found a new doctor. I do agree that I don't want to go on any meds for as long as I can. I think why I'm frustrated is because I feel that they don't believe me about my symptons.

Sal: the rash is hard to describe, it's not raised or puffy but more of a reddening of the cheeks (not on the nose). Also you mentioned canker sores in the mouth, What exactly is that. Is it a big sore or is it something like an infected taste bud. Hopefully that makes sense. You also mentioned something about night sweats, for the last three weeks I've been waking up at night just burning up and this has never happened to me. In fact I've always been opisite of that.

Some of these symptoms I've always blown off or just disregarded and said it was because of my weight or the fact that I am getting older. So I guess I'm wondering how do you know exactly when your hair is falling out or your joints hurt more than they should due to illness versus aging and/or lifestyle?

 
Old 02-01-2003, 12:09 PM   #7
Inactive
 
Join Date: May 2002
Location: Ohio
Posts: 222
Denise F HB User
Post

That's it exactly. Age or Lupus? For years before I was
diagnosed when I got out of bed in the morning I could
hardly walk, my ankles were so stiff but after I would
walk for awhile they would loosen up. Now, I know that
it was my Lupus because now that my Lupus is better-
no ankle stiffness. The facial redness can be rosacea
rather than Lupus. It seems for every beign Lupus
symptom there can be another possible reason for the
problem other than Lupus. I worry sometimes that I will
ignore a symptom that might be serious for another
illness because of being so used to weird symptoms popping up and blaming it on the Lupus.


------------------

 
Old 02-01-2003, 08:25 PM   #8
Junior Member
 
Join Date: Dec 2002
Location: CALIFORNIA
Posts: 42
MAN WITH LUPUS HB User
Cool

Hello Kelly

I had wrot you a lot of info and some how it got lost I mean a lot of info. so Ill make this short I don't think it ok to not be on MEDS so many bad thing can go wrong at any time an they will. Like the rashes and the night sweats. The MEDS keep all the diff symptoms under control. Unless you want to feel miserable all the time. The sores the are bumps you migt get they don't hurt you can feel them with your toung weird feeling. just remember this if you start researching Lupus and you see all the symptoms just know you won't get them all ever one is different and the are accouple of diff types of Lupus if you want to know more Ill tell you later.

Talk to you soon take care

I'm sorry I did have a lot of info to give you look this up. [url="http://epilepsyontario.org/faqs/cross/lupus.html"]http://epilepsyontario.org/faqs/cross/lupus.html[/url]

There are some pretty good Faqs for you just rember not ever one is the same and this does not mean you will develope any of these thing on this web page. Lupus has a lot of thing that come along with it that need MEDS and proper treatment.

Sal

Quote:
Originally posted by KellyinIndy:
Thank you all so much for the replies. I still haven't found a new doctor. I do agree that I don't want to go on any meds for as long as I can. I think why I'm frustrated is because I feel that they don't believe me about my symptons.

Sal: the rash is hard to describe, it's not raised or puffy but more of a reddening of the cheeks (not on the nose). Also you mentioned canker sores in the mouth, What exactly is that. Is it a big sore or is it something like an infected taste bud. Hopefully that makes sense. You also mentioned something about night sweats, for the last three weeks I've been waking up at night just burning up and this has never happened to me. In fact I've always been opisite of that.

Some of these symptoms I've always blown off or just disregarded and said it was because of my weight or the fact that I am getting older. So I guess I'm wondering how do you know exactly when your hair is falling out or your joints hurt more than they should due to illness versus aging and/or lifestyle?
__________________
PEREZ

 
Old 02-01-2003, 09:54 PM   #9
Newbie
 
Join Date: Jan 2003
Location: Indianapolis, IN, USA
Posts: 3
KellyinIndy HB User
Talking

Denise & Sal:

Thank you both for your replies. I have done lots of research on Lupus and other Auto-immune diseases. The information is very helpful and just hope that I can find a doctor as knowledgable as people on these sites.

Denise: I can completely relate to you about waking up stiff in the morning. My stiffness is typically all over and usually by the time I get out of the shower is starting to go away. The doctor took an x-ray to check for Anklosying Spondilitis because of my back pain. Nothing. I've had mid (not lower) back aches since as far back as I can remember and every doctor I've ever told handed me a sheet of paper and said "try these exercises".

Anyway, I just wanted to say thanks for listening and the advice.

 
Old 02-15-2003, 04:19 PM   #10
Newbie
 
Join Date: Feb 2003
Location: Canada
Posts: 3
cwoody HB User
Wink

Hey there! Trust me I know what you are going through. I was diagnosed with Lupus in November 1998 and just last week a new Doctor I saw said said its not Lupus its something else but he doesn't know what. Its the most frustrating thing to go through. I vent all the time it makes me feel better, so if you ever need to vent anymore I am here.
__________________
Colleen

 
Old 02-17-2003, 09:35 AM   #11
Newbie
 
Join Date: Feb 2003
Location: Pensacola, Fla. , USA
Posts: 7
cieside HB User
Post

Hey there,

Try going to a hematoligist, they can run the test and find out for sure. I am on coumadin for life and have so many problems associated with the lupus. Just went to the hospital yesterday and found tumors on the glands, how nice. Just know everyday is a new day, and nothing to be done about it so always smile.
__________________
Cecelia Futral

 
Old 02-25-2003, 01:43 AM   #12
Junior Member
 
Join Date: Feb 2003
Posts: 10
vanessalondon HB User
Post

hi kelly,

i'm really sorry to hear about your frustration. about a year ago my ana came back borderline as well. my mother has lupus and i was very scared because i have seen her deal with it for years. she is much stronger than i. i have not followed up because i don't have any real problems unless i work strenuously for days in a row. then i am very tired and develop a low grade fever.
good luck. it seems you are doing well without meds. meds seem to make my mom more stressed, with the side effects and all.

 
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