Feeling frustrated (..medical thread)

[GinaG3]

I want somebody with medical knowledge please.. Doctors are useless with me, and I give up totally!!!

I have suffered a 'underskin' rash for just over 3 years now. I first noticed it (could of gone unnoticed still for months) when I arrived back in the country after a holiday in Ibiza summer 2007. Since that time I have been researching my little heart out trying to find an answer. Doctors can only be shown pictures as the rash wasn't very persistent (every 3 days or so for about 1-3 hours) but is now daily and lasting upto 24-48 hours. It doesn't itch, it doesn't raise out of the skin. Ive been tested for several things which came negative (this was 2 years ago) and have also been told it could just be Ulticaria - just hives isn't it? If so, not that! Doesn't itch!! Best advice doctors can give is to rush to A&E when the rash appears. Then what? I waste A&E time over a rash that doesn't physically bother me at all just looks really ugly and must have a reason to be there, that I would like to know.

The rash started on just my arms, now spreading to legs, abdomen, chest and hands. It has never appeared on my face or feet. It just generally getting much worse in appearance. Ah thats a good one, its appearance. I'm like a leopard! It is actually a purple and red leopard print rash.

For extra information my father suffered with the same thing for years, was seen by top dermatologists and tropical skin experts (as he has basically traveled the whole world, it could of been picked up from any country in the world) - no answer was ever found, and it was labeled a massive mystery.

I cant go on without an answer, its driving my insane now! I'm taking a shot in the dark here, but I cant be bothered to go sit down A&E for 4 hours to be told its just a rash or I've wasted their time. My mind wonders could it be circulation, or underlying medical? There are a million and one other things wrong with me that 'cant be diagnosed or tested/scanned' because 'it costs the NHS too much money!' I feel sooo let down.

EDITED: TO ADD PICTURE - feeling embarrassed!

http://img802.imageshack.us/img802/962/16648248824260804751662.jpg

[EDmummy]

Have they ruled out Lupus?

[GinaG3]

They have not. Funny you should say it though, its on my 'possibility' list. I suffer too many symptoms attached to systematic lupus and the rash does have discoid (sp?) appearance. I doubt doctors will even consider it though, they see me so much I don't think they actually believe me anymore..

[buggie]

Haven't a clue what it could be - but your description of it being purple/red makes me wonder if it could be vascular - guessing when you press on it it blanches (goes white) and then comes back again?

Is it appearing after you've been exposed to extremes of temperature?

Agree that it likely isn't a typical A&E thing - could it be worth trying the walk-in centre at Lister Health Centre on Peckham Road when it comes up - it's open 7 days a week 8am-8pm.

Fingers crossed for you, at least (from what you say) it doesn't cause you pain xx

[GinaG3]

It does blanch slightly yes but doesn't totally disappear when pressed. No trigger for it at all, wake up with it in the morning and wait for it to slowly fade out, sometimes it doesn't. It comes out darker in water, but dont really think thats relevant.

The rash appears to share the appearance of livedo reticularis.

I can match up to 8 symptoms with Lupus so I'm going to find a recommended Lupus doctor to talk to. Next mission, although I have to wait until the charity offices open on January 4th.

I'm feeling so frustrated and stressed out with it all now, thanks for the responses already.

[bjm]

I can highly recommend the dermatologists at Kings- they saw me with a mystery rash in pregnancy. They were excellent so I would suggest being referred to see them. I saw Dr Creamer who was superb.

[Lochie]

I can second Kings dermatology. I had a condition called purpura post-natally - it was under the skin too and is like the rash you get with meningitis (doesn't blanche under a glass tumbler and very bright purple/red small spots). I was seen very quicky by Kings dermatology. They did the big checks for lupus and other autoimmune disorders....but thankfully for me it is not very serious and I have been told 'it is just one of those things'.

If you are linked into Kings dematology you not only see an expert in skin (the consultant I saw chided my GP for not knowing what she was talking about with regards to my skin!!) but get given an SOS number so if the complaint flares up you can see someone that day so they know what you are talking about (I know what you mean when you wait days for an appointment and by that day the condition is almost gone - very annoying). I had a massive flare up on honeymoon and thank goodness got to see someone the next day so it didn't spoil things for me too much and meant we could fly to Italy later that week. They really investigate things properly as I had a biopsy and full blood tests and in the end was told the main triggers to avoid it are stress and alcohol (sob).

So defo worth asking your gp for a referal - I saw Dr Morris Jones who was fab and also an irish lady (might have been dr Creamer, also fab). Good luck.

[Saffron]

GinaG3 Wrote:

-------------------------------------------------------

> It does blanch slightly yes but doesn't totally

> disappear when pressed. No trigger for it at all,

> wake up with it in the morning and wait for it to

> slowly fade out, sometimes it doesn't. It comes

> out darker in water, but dont really think thats

> relevant.

>

Blood pressure is higher in morning, due to pooling of blood in the veins while the body is reclined. So if the rash has a vascular origin, that makes sense to see it in the morning. Blood collecting in the capillary bed or venules might take a some time to "fade"? If your drs are considering investigating lupus, it's worth ruling out polyarteritis nodosa. Also, if symptoms appear like livedo reticularis, could this be a form of Reynaud's phenomena, thus not related to any other medical condition underlying? And, finally, have you had a blood screen to test for vitamin/mineral difficiencies? Just food for thought.

I share your frustration with the medical system. xx

[GinaG3]

Thanks you for everybodys advice and over PMs too.

First I have to find a doctor who will listen to me. I'm at Melbourne Grove and know I should change already but never got round to it. No GP will see me in Dulwich unless I'm 'their' patient. Problem with MG is you see a different person every single time, I just want a regular GP that will listen and take me seriously. I had to really push the fact I needed to be seen by a gyne and took about 5 appointments with various GP and practice nurses to get a referral that took 2 and half months whilst suffering absolute chronic abdominal pain. I just get treated like the biggest hypochondriac and all I want is answers for my daughters sake.

Is it going to be quicker to try and get a referral to a dermatologist or should I just wait to be recommended a good doctor specialising in rheumatology or such like?! I'm determined this year to get it all sorted and get on with my life again.

Rant, rant, rant, I'm so sorry EDF'ers!

[Saffron]

Can you afford to see a private specialist? If you can, that's what I'd recommend. A private specialist doctor can then write a letter to your GP indicating what treatments he/she thinks are best. It's at your GP's discretion whether/not to follow this advice, but my experience is that if it's fairly reasonable your GP will be ok taking suggestions from the specialist. I have had very good success with this in the past.

[dulwichmum]

Dear Saffron,

I believe that you need a referral from your GP to see a specialist privately in the first place. If the private consultant decides to prescribe treatment, you will be required to pay for it, as your GP is not obliged to pay for it from his budget.

[Saffron]

dulwichmum Wrote:

-------------------------------------------------------

> Dear Saffron,

>

> I believe that you need a referral from your GP to

> see a specialist privately in the first place.

Nope, that's not the case at all. Seeing a private specialist does not require any referral in most cases. If you can pay, you can generally be seen by any private specialist consultant doctor, provided s/he has the time to see you.

>If

> the private consultant decides to prescribe

> treatment, you will be required to pay for it, as

> your GP is not obliged to pay for it from his

> budget.

The private consultant can (a) prescribe you a course of treatment directly, for which you will need to pay. Or (b) can write to your NHS GP and recommend a course of treatment. Your GP is not required to follow this advice. However, if it is a reasonable course of treatment, there is generally no reason for the GP to disagree.

This is what I have learned by personal experience with both the NHS and private medical systems, although others may have different experiences.

[Belle]

Yes, I've had similar experiences. I'm sure it's all down to the discretion of the doctors involved, though. And of course if you're on a private health insurance scheme then you'd need that GP referral. But I've seen, and had my son seen by, specialists privately without a referral. In both cases I was able to get the treatment rerouted onto the NHS once the initial problem had been diagnosed.

[GinaG3]

I've got no choice other than to go NHS. I guess I will just have to sit on it a couple more months (or years..)

Think I will try getting a referral straight to a dermatologist. Now I just have to sway doctors thinking of hives for a full investigation. I'm not wrong for wanting answers am I? I always get told to think about the costs to the NHS before I push something. But how can you live with something for 3 years and have no answers to your entire medical history, just 'normal' ailments that most obviously to my mind aren't.

Saff, do you have a medical background? Ive looked up more on your suggestions and they don't pop out at me screaming 'this is it' but appreciate your help all the same.

I'm only 20, I don't really want to be going through all this. Its really preying on my mind, heavily.

Thanks for all comments so far.. x