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Hello

I am 41 and have been very ill for a long time now. My main problem was put down to IBS for many years regardless of all the trouble I had with my menstrual cycle. Eleven years later I finally got a diagnosis of Endometriosis which was so severe, my gynae said he had never seen a case so bad. It had caused extensive adhesions which have stuck all my pelvic organs together. Along with this I have large cysts on both ovaries and fibroids which despite being previously removed have all grown back rapidly.

Why am I here you ask?

Well after my first op in 2004 I woke up with a rash around my mouth, at the time I put it down to having a tube in my throat. A few days later the rash disappeared and I thought nothing of it. A year later I had a major op and again on waking up I had a rash. This time it got worse and spread to the insides of my mouth, causing small painful blisters. I also got an infection and was given antibiotics which made me feel horrendous.

On leaving hospital the rash cleared slightly, but as the weeks went on it kept reappearing and spreading to different parts of my face, my neck (V shaped area), and my elbows.

It continued to get worse and at its worst looked like I had been severely burnt. I was finally referred to a dermatologist nurse after my doctor had to visit me at home, when I was extremely ill with my Endo problems. She was shocked at the state of my face and said to me “oh dear I didn’t realise things had got so bad“!

So I saw the Derm specialist nurse for over a year. Being put on endless potions and creams to try and cure the problem. I had some results with a couple of creams but the rash always returns. It tends to get worse with my cycle and is far worse in the summer than it is in the winter!

During this time she assured me it was not any sort of contact dermatitis/eczema. But to reassure myself I did elimination tests just to make sure. Nothing I did made any difference at all.

So finally she gave up on me last year and referred me to the consultant at the hospital. I waited five months for the appointment and saw him last November.

The consultant is very old school and wasn’t much for communication, which after years of being fobbed off with all my other things did not bode well with me. He ummed and ahhed and then was just going to leave without saying anything to me! So I stopped him and said “well, what do you think it is then”? “Well it might just be an allergy (NO IT ISNT!) or as I suspect it could be Lupus”.

With that he just left the room and ordered the nurse to get some tests done. I had bloods and urine done and was then sent home. I then heard nothing for ages and was then sent an appointment for patch testing for contact allergies!

I went to the appointment for the patch testing, but wanted to speak to the consultant first to get the results of the tests. But wait they had “misplaced all my tests results”. I couldn’t believe it and said well I want to see the consultant then and forget the patch flipping tests! So this was January and now I have to wait until May until I can see the consultant gain!

I shouldn’t be surprised I always seem to be waiting on the hospital!

I am sorry I have gone on so much but it is difficult to condense my story as so much has gone on.

I wonder if anyone can tell me if a Dermatologist is the best person to diagnose Lupus? I also suffer from extreme fatigue, joint pain and have trouble with dry eyes also. I am seeing my GP next week and I wonder if I should ask her to refer me to a Rheumatologists or not. Although going by my luck I will get another plonking idiot.

I am sorry if I come across as flippant I am not believe me, but the only thing that gets me through is my sense of humour and if I lost that I would lose the plot!

Thanks for reading all this. Any replies are much appreciated!

Regards

Star
 

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Hello Star,
Some people do get diagnosed by a Dermy, but you really need a good Rheumy who sees lots of Lupus patients. (not all Rheumys are experienced in lupus)

Has anyone warned you that sunlight may wel aggravate your condition, get a good sunblock and read up on sun sensitivity here.
My skin used to be terrible but is much better with treatment.
x Lola

Ps You are not flippant, just trying to survive al this. Chin up.
 

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Hello Star, I was first diagnosed by a dermatologist. Well let me start from the beginning.


I had just had my third child in three years when all my problems had started. I had a c section with him and came home from the hospital 3 days after delivery. The first nite home I was sleeping on the sofa downstairs because I could not do the steps yet because of the incision. When I went to sleep I felt fine but when I woke up my whole one side of my body hurt like crap so I just took for granted it was the way that I slept because that just happened to be the side that I slept on that evening. So the next nite I slept on my other side and again in the morning I hurt so bad on that side. Then it got to the point that I could not walk without being in severe pain, so I went back to the hospital and the doc listened to me and suggested it may be nothing but some of this pain could be related to a disease called Lupus.

They then tested me for it and it came back negative. I continued with severe joint pain for approximatly 2 months without really any relief. They put me on narcotics but they did not take away the pain completely. Then it got to the point I could not change my newborns diapers because my hands were so swollen and sore I could not pull the tabs off the diapers to change him. At this point I was so frustrated I went back to the hospital and at this time they basically said it was in my head. Well this pain lasted for about 3 more weeks and then the pain just stopped without any warning or anything just went away , so I thought good now I can get back to normal now.

Approximatly 4 to 5 months went by and I started getting a rash on my face so not putting two and two together I made an appointment with a dermatologist. No sooner that the doc saw the rash he said that looks like the malar rash caused from Lupus and I said that is strange just about 7 months or so ago I was tested for this disease and it came back negative. At this point I had the rash on my face and on the lower part of both of my arms he then said lets get to the bottom of this so he took two skin biopsys one on my face and the other on my right arm. Approximatly 4 to 5 days later I get a phone call from the docs office to come in so I did and the doc says that my results did say that I had SLE Lupus but it just has not showed up in my blood work yet.

At least at this point my mind was set at ease and now I know that all the pain and symptoms I was having were not just in my head as they thought it was. But then after the diagnoses all hec hit the fan and it seemed that for the next 3 years I was in a constant flare multiple hospital admissions and multiple organ involvement. So yes a dermatologist can diagnose this disease but it is better when a rhuematologist or your general practioner does it but it does not matter to me who did it as long as it gets done and at the end you have a diagnoses. Sorry about me rambling and I hope this helps a bit and if not I just typed all this for nothing :rotfl: just joking but I do hope this helps you. Laurie
 

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Hi Star

My dle diagnosis was 16yrs ago and my derm was pretty much the same as yours. His assistant basically did all the work,(I think she was a junkie of some nature... bit o a manic look in the eyes when she handled the needles!) The only contact I had with him was when he did my biopsy and shoved a couple of books with worst case scenario pics under my nose and left me in his office alone to contemplate my possible future. He never looked me in the eye and didn't even know my name. On the flipside... it helped me overcome my fear of needles!

I am also seeking a diag of my sle symptoms so the forum has helped me a great deal in what I should expect. I hope neither o us gets plonking idiots!:)

X T X
 

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Your GP should be able to at least run the ANA test for you if you get in to see him/her in the meantime. If skin issues are your chief complaint or most obvious symptom then a dermatologist is quite likely to be the first to make a diagnosis. If you have swollen and red and painful joints and many other symptoms then a rheumatolist is more likely to make a diagnosis. Either can do it, but you still need a good doctor with experience in this disease.

In the end though, once diagnosed & with symptoms that extend beyond skin only, you'll need to see a rheumatologist. So you may want to inquire now for a referral or set up an appointment. The wait times to get in can be horrenddous some times!
 
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