Hey guys, can anyone tell me what to expect at my first dermatology appointment. I’m super worried there going to make me have a skin patch test with them 40/50 different dots - and I really don’t want it
Also... I have a question. If they do the patch tests and one of them comes back positive does that mean they will then just blame all my illnesses on that one allergy?
I don’t no why I am so paranoid about going to dermatology I feel like this going to be the making or breaking of a diagnosis.
I went to the eye hospital 2 days ago to have my face checked out as all my eyes were swollen and my face. They confirmed it wasn’t allergy related and said it was more rheumatology related. Anyone else get swelling around there eyes and cheeks to the point you look like a minion.
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No, definitely not. The rheumatologist saw autoimmune issues. Sometimes they make sure they rule out allergy - important because that can be a cause or one feature - as well as indicating that it is autoimmune. I have had allergy testing too. I think it must be your eye swelling and some other skin symptoms that they want to firmly diagnose.
Positive patch tests would not explain your inflamed joints, fatigue or cough.
With you it seems important to do the allergy testing because of the extent of the swelling. A lot of us have unusual hypersensitivity reactions too. I react to chemicals in sunscreens when I go in the sun. Others react to the dye in fabrics.
No, it doesn’t work that way. That would make the rheumatologist’s speculation and the ophthalmologist wrong. If allergy could have explained your symptoms, they would have gone in a different direction.
Try not to worry about being fobbed off. Just remember the arthritis. And your facial rash. What did they say about that rash?
They don’t say anything to me about the rash, they just keep saying they will refer me to dermatology. They won’t even tell me what they are thinking they just asked me about my symtoms each time I go see them.
My doctor has wrote to my rheumy asking for me to be tested for something called porphyria now - as he said it’s the only diagnosis he can think of that matches my neuro symptoms.
I just don’t no what to think atm.
I’m wondering why I’m having a X-ray of my hands after my ultra sound showed arthritis. I wish they would explain why I am having things done maybe it’s my fault for not asking tho
My first rheumy appt he said ?CTD to me but then wrote in my letter findings are reassuring and unlikely to be autoimmune. My second appt I saw the consultant who was going through lupus symptoms and saying how she was worried about my chest and symptoms but never told me what she was thinking.
My doctor wrote in the letter I had been referred for ?SLE but now he is wondering if it’s porphyria 🤣
The opthamologist said it’s rheumatological not allergy.
I’m just so confused 😂 I don’t think anyone really knows what to think haha!
My neuro symptoms are
I had a fixed and dilated 8mm left pupil that self resolved after 3 days. Causing temporary vision loss.
with total left eye lid paralysis for minutes at a time on several occasions.
And I had an unexplained siezure last year.
And a severe headache causing permanent vision damage to both eyes equally ( my eyes deteriorated by -1 in each eye) changing my prescription and can no longer see clearly without glasses.
They could all be isolated events but I think he is trying to look at the bigger picture which is nice
Wow - you are going to make the make doctors go bald with the difficulty of your case. 😫 I know this has to be so hard for you.
It is true doctors don’t tend to tell you what diseases they are ruling out and what they are thinking. If you ask specifically, they usually tell you. In your case they are doing detective work. I think they honestly don’t know. I remember the one doctor urging to get an ANA test when your have symptoms.
Hang in there. I wish we could get you on one of those “case of the month” contests. 😜
You just made me smile. Thankyou 😄 I know. It sounds complex so probably is. I think I am probably underestimating how much work they are putting in but I guess it’s easy to forget when your constantly dealing with wierd and wonderful symptoms. And forgot about what they could be doing behind the scenes.
You can trust me on this one. I had to have the full allergy skin tests when they were looking into mast cell activation disorder. They are super expensive, and the doctor I was referred to who specializes in allergy dermatology stuff didn’t take my insurance. I had to pay upfront with a credit card. That was a lot more than my trip to a mast cell specialist in another state. So you bet they are in major detective mode with you! Our insurance companies in the US and NHS don’t allow these expensive tests unless there is true need. Follow the 💰💰
By the way, repeat rheumatology testing is also costly. In the hospital, when a child was admitted with confusing symptoms and the rheumatologist was called in, the residents referred to the “million dollar rheum work up.” 😅
You take the 🎂 in my book for stumping the doctors. Just going by what they tell you and how they keep exploring. Usually it is the opposite. They don’t see evidence of inflammatory disease and the rheumatologist send you back to GP with a diagnosis of fibromyalgia or something.
I love reading your replies.. it’s always at a time when I feel crap and they always seems to pull out a little laugh my end 😂
I remember reading (during my days on 24hour googling desperately trying to find answers) that rheumatologists tend to see you once and discharge you back to your gp. So yeh your totally right.
Oh god see if I had to pay upfront for any of this I would either be bankrupt or just not able to afford it at all.
I would probably be remortgaging my house just to pay for the amount of tests and scans I have been put through this last 3 months.
My main concern is my white cell count - it’s gone from normal high (9,500) to 5,500 and dropped again to 4,325 in a month. Even though it’s still just in normal limits I would love to know what the major drop is caused by.
I don’t no much about white cell count but I know what’s not normal for me.
I need to get another list of questions together for my phone appointment I think.
Glad I got a laugh on a hot day. It is dreadful, isn’t it? The heat is not fun but really does a number on most chronically ill people.
It is interesting the difference in how you see medical tests and we Americans do. We know the cost of most of them. I can usually see why U.K. doctors are refusing certain tests because I know which ones are through the roof 💰.
Don’t melt yet. You still have your allergy test, 🎂!
I’d estimate at least $5,000 in blood tests if you were in the US and the allergy testing would be more than that depending on extent of testing and physician fees.
Why are you scared about visiting doctors? Don't you think they are the ones who can really help you? All of your scares are from your uncertainty about yourself (or even your doctors). If you are so scared, you can visit the expensive private clinic to make sure any diagnosis is 100% correct. When you visit dermatology centers, such as vitalskinderm.com/locations... , you don't tell them how to make you more beautiful. They know for sure what to do. The same with doctors - they know all the options and risks precisely. Just let them do their job.
I get pre anxiety I don’t no why, it just happens. Once I have seen someone for the first time I’m ok. Probably because for the best part of 10 years of health problems I have been thrown back and forth between people.
Hi there. I get swollen face nearly all the time sometimes more sometimes less. It gets worse when I have an infection. I had NHS allergy tests and all were negative. I do have a lot of food sensitivities/intolerances. I think the swelling is caused by my lupus.
Did you have to have all 40 disks. The thought of working with them on all day in this heat and then not being able to shower when I get home seems so uncomfortable
I found dermatology excellent. They will be ruling things out so should ask loads of questions. When I was first diagnosed many years ago, they thought it might be porphyria because of the sun allergy. I had lots of tests then and saw mainly dermatologists and ENT for swollen glands. My dermatologist gave me a diagnosis of suspected SLE but that wasn't confirmed until ten years later, when I had 2 stones' worth of water retention (swollen face in morning and legs by afternoon!) I lived in a different region then so was referred to a different dermatology team who wanted a full medical history, so do be prepared. They asked questions about things I wouldn't have even thought of mentioning. I was in hospital for three weeks on the dermatology ward for a whole string of tests (yes, including allergy and light tests) and was eventually given a full SLE and Sjogren's diagnosis with PME and referred on to rheumatology. Not all dermatologists would be as fantastic as they were but they were the ones who did everything they could to get to the bottom of what was going on and took everything into consideration. I hope your experience is as good as mine was.
Hey! Thanks for that message! 10years.. that’s a hell of a long time. So sorry you had to wait that long.
Iv never heard of porphyria untill my gp mentioned it the other day. Why did they suspect that? I wonder what made him pull that one out the bag with me.
I think mentally I have a thing in my head where I feel like all health professionals are against me rather than for me. Don’t ask me why. I really don’t no.
How are you finding things now, are your symptoms managed well? X
3 weeks in hospital with intense testing that sounds like some serious BODY MOT!
Did they find anything with your allergy test? And light tests?
So it sounds like she is saying she thinks you do have autoimmune disease but still doing work up to try to diagnose more specifically.
There are people here with Behcets and will be helpful, I’m sure. I don’t think there are blood tests that confirm Behcets which makes the diagnosis difficult and made on clinical grounds.
Haha! I’m not making it easy for them at all am I haha! Poor guys. Really are earning there wages with this one 😂
I did try and search behcets on here but didn’t get much luck on posts. Maybe I missed them.
I just went through a really horrible week where my eye lids and face were really swollen and my eyes were so blood shot there wasn’t any white left. Ended up at the eye hospital where they said it was not allergies and think it’s down to inflammatory condition. So yet another wierd and wonderful thing ..:
Honestly it’s never ending atm. Feel like checking in to a body rehab! (Not that they exist but if they did .. I’d be there)
Any idea what the anca test is. All I read is somthing to do with vascular
Haha - the body rehab .. you are having a tough time. At this point I think you would be treated with steroids if you needed them since the letter indicated only two conditions, both of which respond to immunosuppression. I am not saying you need them, just that you can maybe be reassured you can be treated.
I will leave it to others to comment about the ANCA. I have never had that test but know it is in the category of immunologic tests people here get.
So sorry about your eye swelling. You were smart to go to the eye hospital. That is also valuable information for your doctors, though they may have had that impression.
I am doing well. I had an appointment with the radiation oncologist yesterday who is pleased with how I have come through. He says cancer is a lot less complicated than autoimmune disease. That probably isn’t much consolation right now for you. But it does give us perspective. 😅
I mean I can see what he means in a wierd sort of way. I’m super happy that your doing well and that things are positive. That fab!
I am tempted to ask them soon if they have any idea when they might try and help me out a bit with some meds instead of multiple hospital trips I would quite like a month where I just done swell itch or ache. 😂
Do you have a date? Good luck! Not entirely sure what a scope is but I can only guess it’s not going to be much fun. - sending you a hug for the day
I’m going to wait for her to call me with my scan results and then I’ll broach it. I mean Iv dealth with this almost monthly if not consistantly over a year now I probably deserve a little break from it all haha!
I think she will be sympathetic and explain to you why she doesn’t want to do anything yet if that is the case. This is the art of medicine. There is no easy way to plug you into a computer program and know what to do. Me, on the other hand, they know when the surgeon needs to look inside with the scope - in two weeks - and when to do the CT scan - two months after radiation. This is cookbook compared to your case.
My dermatologist on the first visit done a head to toe skin inspection, yes everywhere, even private area. Didn’t do any biopsy at first visit. Had to go back the next week for that.
I found my dermatologist absoloutly lovely and seeing her again in 4 months but she didn’t do much. Except look at photos, check my listed symptoms and medical history and saw that my eyes were in a bad flare, then said she agrees lupus and wants to start me on hydroxy. I haven’t just yet but will be. Didn’t do biopsy as rash wasn’t present. Anyone else have a similar experience ..?
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Allergy skin testing / Cutaneous lupus 
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