[Mink]

Hi all,

I'm 22 female & in the uk, I'm currently waiting on test results for Lupus and i'm so stressed i cant think straight, here's my story.....

It all started back in Oct-08 i was at work and started with awful pain in my kneee, couldn't put weight on it and it started to swell, i went to a&e and they told me i must have hurt it somehow, but i knew i hadn't. They took x-rays and all seamed fine so they sent me home on crutches.

Since then this has happened a few times, only lasts a day or two and happens to both knees ( not at same time).

cut to a month or two later and i wake up with excruciating pain in my wrist, had limited motion and it was a constant deep ache, this lasted for about a week, by the time a'd got to see the doc, it as pretty mutch better.

as with the knee, the wrist pain aslo happened in my other wrist, not quite as bad however. both wrists & knees have 'never been quite right since'

had another bad episode with my shoulder too, with same pain as above.

i also get pains & aches all over everyday, some very mld that just last a second, others' sharp painful and prolonged.

also recently i've noticed chest pain, headaches, blurred vision which promted an eye test, my eyes are uber sensetive to sun light & i have sore/tender spots on my body. also running fever but dont feel like i'm coming down with anything

I'm always in pain, stiff, achey, moody. I feel like an old woman and i'm only 22

i thought this was many things, mostly osteoarthritus but i've recently been reffered to a rheumatologist, who mentioned Lupus, i'd never even thought of Lupus, and had zero knowlege on the subject. he took blood in order to run some tests, this was 28th may. and i've still not heard anything. I'm going out of my mind with worry!

i've also been diagnosed with anxiety disorder recently, have minor seiures, where i shake uncontrollably. dont know if its related.

Oh i dont have the butterfly rash or any other rashes.

sorry for the long post guys, but i really need some support! the more i read upon lupus the more i convince myself i have it, i just want answers!

x

 

[lazylegs]

Welcome to the site.

It has been long enough for the results to be back. You could call the office to see if they have all come in.

You mentioned sore spots. They are common in Fibromyalgia. You might want to check Fibro out to see if you tender spots are in the same area. It is not uncommon to have both diseases.

http://www.rheumatology.org/public/factsheets/diseases_and_conditions/fibromyalgia.asp?aud=pat

Please feel free to ask any questions you have. Our members are more than happy to help if they can. We all understand what it is like to have strange symptoms coming and going with no answer for them.

Take care,
Lazylegs

 

[Mink]

Thanx for your reply,

well i called my gp surgery on thursday just gone and they still hadn't come in, the receptionist said it usually takes a while but to call back on mon/tues if i still hadn't heard anything. do you think if i called the hospital they could tell me? it seams to be all i think about at the moment :-(

 

[Clare.T]

Wishing you a warm welcome Mink

I am sorry for your alarm which is very understandable. Waiting for test results and hoping for answers is always unnerving. We all learn the lesson of patience as a necessity

I am very surprised that a follow up appointment wasn't made with the consultant or department to discuss the results of your tests as this is the usual procedure. I have never heard of test results being sent direct to the patient in the UK nor of a hospital giving them over the phone, which would be totally out of order, data protection and patient confidentiality issues for starters. On the NHS, a follow up appointment might be as long as two months after the initial consultation

I suppose the results might be sent to the GP with the consultant's conclusions and recommendations but that is not satisfactory, 'good practice' as they say. The proper thing is to see the consultant again to have the opportunity to have things explained to you and ask questions as well as to order any further testing.
If you have a number for the rheumatology department or consultant's secretary you could reasonably call to ask when and how you can expect to hear from them again, and shouldn't a follow up appointment have been made

Diagnosing lupus can be tricky since the symptoms and tests usually need expert evaluation as there are very few aspects unique to lupus and not everybody with lupus has these symptoms.

Even if it is possible to get the results sent direct to you as in some countries it's best not to get test results until you see the doctor because they most often cause even more alarm. You need to be an experienced very well informed patient before you can start really interpreting them although getting the results afterwards and learning their significance to your own case is an important part of coping.

I have to say try not to worry, although of course being concerned is very normal but it is such a waste of energy. Things are as they are and it might not be lupus anway.

For one thing, you don't know exactly what you have to worry about. Lupus affects each person slightly differently in symptoms and their severity. Most of the diagnosed people who post here have ongoing problems. The people who are living well with their lupus well controlled do not usually need to use forums.

For every sad story you read here there are probably several whose experience has been the opposite. Life goes on and we gradually learn to deal with it, albeit often with difficulty. We can help you a lot with this and answer all the questions without you having to trawl through the net and alarm yourself still more. The article on the information section of this site give an excellent outline of the most important things to know at the stage you are at.

So don't hesitate to ask any questions you may have. We will do our best to help you through this difficult period.
By the way your anxiety could well be lupus related as could the seizure type events. Don't hesitate to see your GP about it if it is interfering with your life. Both the GP and the rheumatologist need to be informed about these shaking incidents.

Please keep in close touch and let us know how you are getting on.

Bye for now
Hugs
Clare

 

[Shadow girl]

Hugs to you. You could have those problems because of something like Lupus or Fibro, or you could have those symptoms due to extreme anxiety. Hope you get some answers soon. Try not to worry too much (I wish I could practice what I preach).

Wendy

 

[KarolH]

I certainly hope your able to get answers soon.

You have been given some very good advice here.

I wanted to send you gentle hugs and wish you luck towards finding out what is wrong.

Let us know how you make out moving forward.:wink2:

 

[Mink]

thanks for all the replys & all the great advice.

I wll be phoning my gp sergery again today to see f they've heard anything, if not i think i'm going to call the hospital, so will keep you all updated.

x

 

[pamela b]

Hi
I am too new and inexperienced to say what may be wrong.
I do know how ever that the rash I started with was on the back of my neck and v of my neck.the v being permanent and I only get strong blush on cheeks. My bloods took a month to come back and the surgery said to me that as they are very expensive to run they may wait unti, they get a batch.
Try not to worry, although I know it is hard but keep pestering them until you find out what is wrong. Once they know they will start to help you.
Good luck
Pam

 

[Mink]

hi every 1

Phoned my GP surgery this morning (not helpful at all) so i phoned the hospital, they had most of my results back (all normal) however they are still waiting on 'auto immune type blood tests' to come back! LMAO

so i'm still no closer to knowing as these are the tests that would determine if Lupus is in fact present.

Work has been hellish today, i still cant seam to take my mind off my 'illness' it's been soo stressful recently :-( also having a bit of a flare at the moment, had really sore wrists today which made work more difficult, i feel like i'm the 'slow' one who cant get thngs done as quickly as everyone else, i'm sure my boss has noticed too.

Also got a meeting on weds about all the time off work i've had recently, they want answers!!! HAHA DONT WE ALL??!!?!

I feel like i'm in a catch 22 situation atm as i obviously dont want them to tell me i have luus, but on the other hand i dont want them to say that thay havent found anything, as i'll then just be back at stage 1, fighting for someone to believe in my pain! the not knowing i seriously killing me.

Anyway, thanks again for all the kind words, and for listening to my 'rants' you guys are ace!!!

Will keep you posted as soon as i know anything else x