View Full Version : Hello, I'm new here.

04-02-2009, 03:05 PM
Hello. My name is Roxanne and I'm 20 years old and I live in Northampton, UK. I am currently unemployed, as I was dismissed due to sickness levels last December.

I have had a bit of a struggle getting people to believe there is something wrong with me. At first I was just tired, too tired to function, which resulted me in missing a lot of work. (If I'm too tired to actually get out of bed, HOW could I walk 2 miles to the office?!). Soon after, the joint pain started. Soon after that I got a lovely rash on my face. It didn't do anything, it was just red and hung out across my nose and cheeks.

It was only when this rash showed up that everyone decided suddenly that maybe I wasn't faking everything.

I then got transferred to an an auto-immune specialist rheumatologist. I had my blood work sent off to him and my doctor was sure I didn't have lupus.

Well, after seeing my rheum, I'm not so sure. He said that an autoimmune disease was probably unlikely since I'd be showing more signs (because having 2 random seizures, joint pain so bad I can barely move, a stupid rash on my face, an all encompassing tiredness and oh yeah, my hair is falling out, just isn't enough) and that it was probably "reactive arthritis" since my first diagnosis was glandular fever/mono. Yet I saw him write ?SLE on all my forms. Great. I have another appointment in three months time, at which point I have to get 11 (!!) blood tests and an MRI. Great.

So yeah. Hi.

sick n tired
04-02-2009, 10:26 PM
Hey Roxanne,

so what you need to do is find another rheumy...seizures, especially random ones can be one of the signs..at least that is what my doctor says...

I do understand how frustrating it is to know you are ill and the doctor look at you like you just grew another head...so find a second opinion...I did and stayed with the second opinion doctor.

04-03-2009, 04:56 AM
hi roxanne,

so sorry to hear that you are encountering the common frustrations of getting a diagnosis.

it took my over 10 years of struggles to get a diagnosis, even though my ANA was always positive. i just did not meet enough of the symptom criteria for a diagnosis. if i had kept a diary of the different symptoms that i intermittently experienced, i would have been diagnosed much earlier. if i was not experiencing a symptom at the time of my dr. appt. i answered no to the symptom questions, and so i delayed my own diagnosis.

please check the "sticky" threads for symptom descriptions, make a journal of any of the symptoms that you have had (even if not present now). also, when my dr. would ask about mouth sores, I was envisioning really big and painful sores in my mouth, so i answered no. Now i realize that these can just be raw spots, that are aggravating, but not necessarily painful.

use the information here, educate yourself, make a journal, and be your best advocate. you may or may not need to change drs. but don't let any dr. question your sanity or make light of your pursuit for answers.

good luck, and hang around, we are here to help.

04-03-2009, 05:05 PM
Hello and Welcome Roxanne... :wavey:

I'm glad to see you've joined us. You've found a group of people that completely undersand what you're going through....not only with the symptoms and suffering, but dealing with the doctors as well.

It's so frustrating that people don't believe us just because we 'say' we don't feel well...they must have visible proof that something's not right before they sit up and take notice. This has got to be one of the most misunderstood diseases around, by both the general public as well as many of the doctors that are treating it.

Did your doctor offer you any sort of treatment for the symptoms you do have? Or do you just have to wait 3 months for him to start running blood tests? I'm curious why he didn't start with some labwork right away to get a picture of what's going on now. What's the reasoning with having you wait 3 more months to even start? That seems like a long time to be just waiting....for what, more symptoms to appear? Or maybe he just needs you to have a few more seizures, the rash to spread to other parts of your body, your hair to fall out in clumps, and sores to break out in your nose and mouth before he'll take you seriously.

I understand that maybe you don't meet all the criteria for a Lupus diagnosis, but you do have symptoms that you need some help for. Is there a way to see another doctor sooner than 3 months to get a second opinion? ...One that might want to run some tests on your blood now...not in 3 months.

I'm sorry you're having to go through this...and that you've lost your job as well. Gentle HUGS to you...just to let you know I care.

You should stick around here and meet up with our fun group from the UK...they are a great bunch of ladies and guys that provide encouragement, understanding, support, and a few laughs for everyone. I'll bet they pop in here soon and lend an ear....and share a few words of their own. :hug:


Lori :heart: