[Aggie69]

Just wondering.....can lesions appear anywhere on the body? I mainly have it on the face, scalp and ears but also my genital area which flares up just before/during my period.

There's a possibility of an appointment with a lupus specialist and as usual I've started to convince myself that it is just psoriasis (although my derm stated this would show on my skin biopsy....it didn't). Silly, but I worry about wasting people's time.

Also, do people get days when they feel like they have the start of a cold, ie. earache,sore throat but then it never progresses to this? Sorry to ask all these questions but I've never had the opportunity to do so before now.

 

[Whisper]

Hi Aggie

I am just newly diagnosed (2 days) and I am definately no professional. All I can do is relate to you. I get lesions all over my body, mainly my face, neck & ears, but I get them on my chest, back and more recently my arms. So far none below my waistline.

I have had cold and flu symptoms straight for 7 months now, in the last 3 weeks developing into what felt like crippling flu, so much so that I could barely get out of bed, which I am hoping will be relieved soon with treatment.

I hope you get to see a Lupus specialist soon.

W

 

[Aggie69]

Hi Aggie

I am just newly diagnosed (2 days) and I am definately no professional. All I can do is relate to you. I get lesions all over my body, mainly my face, neck & ears, but I get them on my chest, back and more recently my arms. So far none below my waistline.

I have had cold and flu symptoms straight for 7 months now, in the last 3 weeks developing into what felt like crippling flu, so much so that I could barely get out of bed, which I am hoping will be relieved soon with treatment.

I hope you get to see a Lupus specialist soon.

W

Thanks W. I hope your diagnosis means that you will start to feel better very soon.

Before I even understood what lupus was I've been moaning to my GP about continually feeling like I'm coming down with a cold/flu. She notes it but at the same time looks at me like I'm mad! At the moment I have lesions on my scalp (comes and goes), ears, eyelids, above eyebrows, corner nose, neck, chest, arm and genital area. Strangely they seem to get 'angrier' just before my period is due to start, are awful during and then calm down when finished. Again, this is something I've mentioned to derms even before I started researching lupus.

I'm just starting to have self doubts about visiting St Thomas' because I've been to a couple consultations in the past where I was told the rash 'could be cutaneous lupus, but don't worry, it's probably just psoriasis.' Also, I suppose many of my symptoms could be attributed to the Fibromyalgia I've been diagnosed with rather than it being Lupus.

I'm just worried that I will be told this again and end up looking silly in the consultants office. Saying that, my logical hubby has just said 'If you go to London and it's found not to be Lupus then at least that's another thing crossed off the list. That's a good thing, so don't fret about it.'

He's seen how poorly I've been for the last three years (been on the receiving end sometimes!) and reckons it's about time I was checked out by someone who knows what he's talking about....better to be safe than be sorry. Thank goodness for sane thinking other halfs I suppose!

Once again, I hope things start to improve for you in the very near future.

 

[Maia]

I sincerely believe that you won't get that feeling at St. Thomas's.

I have frequently gotten the exactly same feeling you describe... feeling like I'm coming down with a cold but then never actually do. It is very unique from my usual lupus symptoms and flares, but perhaps they are related. I will tell my husband that I'm afraid I'm coming down with something (cold) and to keep his distance and then it never comes! Just like what you wrote. I've not mentioned it to my doctors yet actually. So not sure what my doctors would think of it!

 

[onetay]

aggie69,
I too get lesions ranging from head,neck,shoulders,back,chest,and even my legs. You should keep your appointment with the doctors and don't feel like you are waisting anyones time. You need to know what is going on and why, if nothing else for some relief if possible. Try to stay in a positive frame of mind and let them know that you won't give up that you want some answers. Please don't give up it took a long time for them to find out I had lupus. My doctor didn't want to scare me so he went around the bush a few times before he just came out and told me. I think that is why you got the don't worry if it is lupus. People handle the news very differently as they have different problems with their lupus. I hope you find your answers and relief soon.
Tammy

 

[Aggie69]

I sincerely believe that you won't get that feeling at St. Thomas's.

I have frequently gotten the exactly same feeling you describe... feeling like I'm coming down with a cold but then never actually do. It is very unique from my usual lupus symptoms and flares, but perhaps they are related. I will tell my husband that I'm afraid I'm coming down with something (cold) and to keep his distance and then it never comes! Just like what you wrote. I've not mentioned it to my doctors yet actually. So not sure what my doctors would think of it!

Hi Maia.

Strange feeling isn't it? With me it's normally ear ache and sore throat with a headache. Like you, I've lost count the amount of times I've told hubby I've got a cold starting but it isn't.

Thanks for the reassurance about St Thomas's.

 

[Aggie69]

aggie69,
I too get lesions ranging from head,neck,shoulders,back,chest,and even my legs. You should keep your appointment with the doctors and don't feel like you are waisting anyones time. You need to know what is going on and why, if nothing else for some relief if possible. Try to stay in a positive frame of mind and let them know that you won't give up that you want some answers. Please don't give up it took a long time for them to find out I had lupus. My doctor didn't want to scare me so he went around the bush a few times before he just came out and told me. I think that is why you got the don't worry if it is lupus. People handle the news very differently as they have different problems with their lupus. I hope you find your answers and relief soon.
Tammy

Thanks Tammy. I know you're right. I've not been well for the last 10 years with things getting worse over the past three. As lupus is a progressive disease I suppose it's best to get it crossed off the list by a specialist rather than a numptie who doesn't really know what he's talking about.

I wondered whether you could have lesions on the lower part of the body as I seem to read that it is mostly scalp, face, chest, neck area. Like you, I also had one large lesion on my lower leg but it suddenly disappeared after about 5months.

Is it possible to describe what yours look like, etc?