[lauren_kitts]

okay here r my symptoms just got off the phone with my Dr. and he thinks i'm crazy I never say the L word to a Dr. but I want to scream and give them a vial of my blood.... ha ha

weight loss
nose sores
rash for ages (supposedly shingles im 22 had it 12 times)
muscle stiffness
chest pain when breathing deeply ( sudden and sometimes)
rash reaction to sunlight and tanning lamps
IBS
kidney infections
bladder infections
all kinds of infections******
please am I crazy????

 

[onetay]

Lauren,
You are not crazy that is the first thing I want to say. You have a lot of things going on with you and it seems it has been over time. Is this a general doctor that you are speaking with? If it is than I would start with trying to see a dermy for the sun issues and a rhuemy for the joint issues and see if they can talk to each other as you need answers as to what is going on with you. I know being 22 you are about at your wits end but hang in there as it takes time to put it all together and the right doctors to do it for you. If you need to talk or vent we are here and have most likely already been there so we can relate to what you are saying very easily. I wish you the best and please don't let anyone tell you that you are crazy or convience you that you are. It may not be lupus but it could be something just as ugly and unpleasant to deal with.

 

[Maia]

You are probably doing the best thing to avoid saying/asking about the "L" word - that can be a big turn off to many doctors. But it also reaches a point where you have to ask questions... to get them thinking down a different path if they haven't yet started to look into it. It is fairly reasonable to ask your doctor if something autoimmune could be behind a lot of your symptoms, and then ask for a referral to a rheumatologist if he/she will not further pursue the possibility. Do you have a family history of diagnosed or possible autoimmune problems?

With you getting a higher than expected number of infections - I would also be wondering about an immune problem. Have you been able to see what labs have been run on you in the past - gotten copies of them? See if they have tested your immunogobulins (IgA, IgM, IgG). I have low IgA and have had an increased susceptibility to infections, and low IgA is also related to increased risk for lupus too.

Love the dermy suggestion - it would be good to take in photos of the various rashes you have had over time (if you have any). They can do a biopsy to aid in diagnosis; either affected or unaffected skin can show lupus.

Hang in there and you have to keep fighting for yourself. You need a diagnosis - whatever it may be - to hopefully finally get on some truly helpful treatment. Seek out a dermy or a rheumy on your own if you have to and are able to do that... Good luck and keep us posted. You've definitely found a great place for information and support.

 

[doris999]

Hi lauren,
I have 7 of your symptoms, and a few more. I have been diagnosed with discoid lupus, but not SLE.
Still waiting to find out whats wrong with me, with all the tests they have done, they say there is something wrong with my ammun system, OK-but what? no more tests.
So i understand the frustration you have, cos i'm that way as well.
Hugs.

 

[panda eyes]

hi lauren i also have some of the symptoms you are experiencing,ive had lupus for the last 13 years and had a flare up this week first time in a while. Unfortunately it can take a long time of suffering and trips to the doctor for a proper investigation and diagnosis to be made as the illness can mimic others(which tends to confuse the doctor somewhat). Mine took almost a year to diagnose(dont mean to alarm you). Please persist your not going mad and we are all here to give you support. I wish you well x

 

[pollianna]

I couldn't get to a rheumy even with fatigue hair loss and joint pain. I think the suggestion to ask if something could be wrong with the immune system is a great one but also ask if they could test more than once as immune system illnesses fluctuate. You will get lots of support here. Hang on, it always surfaces why we go through what we do in the end.

I kept on telling my GP I feel that my body is trying to tell me something and the feeling won't go away, eventually he let me see a rheumy

 

[lauren_kitts]

Thank you for your answers and support yes i have a rheumatologist he says i can be tested if I want but makes me feel like I'm over reacting I have taken some hotos of my most recent rashs and am very persitant in keeping a log of my symptoms... I gotta say though that every time I go It gets more frustrating... I am lost and its been almost 2 years since all this started... i feel like im 60 and its hard to get out of bed somedays... you all have really helped with your insight!!!! thank yoiu again and i look forward to more...:blush:

 

[Pink Pearl]

Lauren,
I would find a new rheumy. The first rheumy I saw put me down for wondering about anything but what HE determined to be. He even went so far as to tell me that lupus could not disable.

I finally settled with rheumy #4, but my pulmonologist was the one who finally diagnosed me with lupus. He was also the one who initially put me on methotrexate as the rheumy I had then was against us using it. I finally found a new rheumy when the previous rheumy was very antagonistic to my pulm doc. So, just because one doctor is stuck in his rut, does not mean you have to stay with him. There are a lot of other doctors out there. Having an MD degree does not mean they walk on water and keep their feet dry!
Sally

 

[Clare.T]

Hello Lauren

yes i have a rheumatologist he says i can be tested if I want but makes me feel like I'm over reacting

What the heck sort of doctor is this! Of course he should be testing you and it is awful to make you feel bad about finding out what's the matter with you when your life is such poor quality. Do your very best to get another rheumy who takes you seriously. You can always say " it has been suggested that I might have an autoimmune connective tissue disease"
A good doctor won't mind that, what they do not like is people stating
" I know I have got lupus ".

But the main thing is that something is very wrong, ruining your life, and you are determined to find out what's wrong.

A dermatologist could help with the rashes. For SLE, a biopsy from unexposed and unaffected areas like a buttock can show lupus.

By the way, I hope you are protecting yourself against sun exposure and please, never ever use tanning beds.

Good Luck - let us know how you get on please

Clare

 

[LolaLola]

Hello Lauren,
Your experience is the same as many others here I am afraid. Of course you need testing. My concern is that if you do have an autoimmune disorder the Rheumy you have seen so far does not seem as if he would be best suited to treating you. Would you be prepared to change. Many of us had to shop hard to find the support we needed.
Best of Luck,
x Lola