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View Full Version : My doctor's just don't care! :'(



butterflybabe
06-23-2009, 03:33 AM
Hey people I'm new to this forum
I've not been diagnosed with lupus but have had all the symptoms over the past half year including the dredded 'butterfly rash' on me it's quite faint, so it's something the docs never pick on. (i'm 20yrs old)
My body began going downhill during a toe infection which wouldn't go away and was getting worse. I was given 3 rounds of Amoxicillin (penicilin) which my body was really allergic to and ended up in casualty with palpitations and such a sore chest and heartrate over 130bpm.. the antibiotics had made me really weak I knew my heart area was weak and inflamed feeling but at the time doctors didn't know what the hell it was and my local GP told me it was stress even when I cried in the room saying I felt so bad and just wanted to return back to normal she gave me a mental health card! I was so angry and upset...so stopped visiting the doctors for ages.
I know it was a reaction to those penicilin as a year on I've been prescribed them as I keep getting much worse chest pain, leg pain, exhaustion and this horrible blotchy red rash on my face which the doctors don't seem to care about. I'm sick of seeing different doctors who keep handing me antibiotics after antibiotics which aren't helping the inflammation at all and just give me thrush! :wacko:...they think I just keep getting infections...but apart from all the pain and weakness..I don't feel 'fluey' if you know what I mean? and because all my blood tests are 'fine' and white cell count is normal. I've recently been diagnosed with PCOS (polycystic ovary syndrome) and he said my 'slightly raised testosterone levels could explain the chest pain and face rash'? Does anyone on here with Lupus also have polycystic ovaries? :unsure: I wouldn't be making such a deal over it if my aunt didn't have Lupus - she's 42 and don't see her that much but was told she can't go abroad to any hot countries anymore because of it.
I just don't know what to do. My joints hurt, ankle swells up even my wrists hurt!...it comes and goes like the tide..some weeks better than others so now my doctor probably thinks I'm a nutcase or a hypocondriac! :embarrassed: I've not told him my aunt has Lupus as I'm scared he'll think I'm trying to self-diagnose myself, but do you think it's something I should mention? I'm getting nowhere and feeling so exhausted and sore to the point I'm housebound :sleepy: If anyone can help at all it would bring so much reasurance, thank-you.

Monique89
06-23-2009, 04:06 AM
Hey there!!
I am sorry i cant really help you a lot with all of the symptoms, as i have only been diagnosed myself a month ago...
You dont have to have abnormal white blood cell count to have lupus though, mine is perfectly fine. I wouldnt take any more antibiotics if i were you though, if they arent helping the symptoms, then they jsut throw your system out if you know what i mean.
The joint pain does sound like it could be lupus pain, though i havent really had much of it to know...there are also many other conditions that can cause it...
There are others that will have much better information than me, but i just wanted to reply and say hi!

gina
06-23-2009, 05:01 AM
Sorry you feel so bad. you need to have your dr. give you a full lab work-up and tell them about your aunt. it is link to genetic make up in some cases. there are people here more educated than me so hopefully one will be along soon.

You do need a lupus profile done on your blood so ask for the test for now its a start. hope you feel better soon.:yes:

mountaindreamer
06-23-2009, 06:40 AM
hi butterflybabe,

again, i welcome you to our world-wide family of the sky. I am so sorry that you are going through all of this, and hopefully we can help you get the answers that you deserve.

first, do you have an advocate who can go with you to dr. appointments? The presence of a friend, or family member can often put the dr. in a position where they try a little harder to help you....it is more difficult to write this off as "in your head" when there is someone there supporting your efforts.

second, be sure to list all of these symptoms that you are describing....take them with you to the dr.

third, you need to be referred to a rheumatologist...the pcp is not an expert on auto immune diseases, and needs to send you to someone who can run the appropriate lab tests, and compare the results to your list of symptoms....then hopefully can tell you what is happening to your body and begin an appropriate treatment plan.

fourth.....keep talking to us, we will try to help you....there are so many members who have expertise in different areas, and we will walk with you through this difficult diagnosis phase.

gina
06-23-2009, 09:17 AM
mountaindreamer took the words right out of my mouth. you should follow her advice.:yes:

lucky7
06-23-2009, 03:34 PM
Yep, Phyllis summed it up quite nicely!!!!!! :yes:

pandagirl
06-24-2009, 05:24 PM
sounds like your MD is an ass and you need to for another opinion..If you dont need a referral, go right to a rheumatologist. I even had to go to several of those for a proper diagnosis. Hang in there..it is NOT in your head.:wacko: