Almost an answer

Numpty · Posted: Sun Apr 06, 2008 2:00 pm Post subject: Almost an answer

Well I had another appointment with my Rheumatologist last Friday and I still don’t have a 100% diagnosis.
What did happen was she said that I am not a typical lupus case… is anyone?
I have a horrible rash on my face which consists of large red lumps which can appear and disappear over a matter of hours. When the rash is full on though its horrible, please don’t even want to sit next to me on the bus.
I have joint pain on an off which can get bad enough for me to have to use a walking stick. Again I might have a week of no pain then a week where I hurt bad enough I cry off and on all day.
I’m tired all the time but also found out recently that I have sleep apnoea so that could explain that away.
My dentist thinks I have the start of dry mouth. All my fillings are along my gum line and even those randomly fall out and have to be redone (which is what I’ll have to have done tomorrow).
I regularly get really gritty eyes and have to put drops in them.
I also have times where I’m talking and forget what I was talking about or I’ll open the fridge then forget what I was looking in there for etc.

I have one anti-body (my ESR I think) which has been high before but is now within the normal range but is at the top end of that range but my ANA has always been negative.

My Rheumy wants a skin biopsy done on my rash by the dermotologist refuses so far to do one. Without the tissue sample I can’t get a final diagnosis.

She did however write to my GP to get me a prescription and has put on it ‘Probable SLE’. So that’s all I have to go on for now. I’m now taking 200mg of Plaquenil daily along with 10mg of Anatriptiline for my headaches.

Fingers crossed that they start to make a difference to me soon and that I might finally get a biopsy done and have everything confirmed instead of feeling as though I might be ‘making a mountain out of a molehill’.

Thanks for being here for me.

C x
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Numpty:- (num-p-tee) dialect, chiefly Scot, ~n. 1. a bumbling fool: one who is intellectually challenged. 2. widely known in Scotland as an MSP (Member of Scottish Parliament).

sits_inthe_corner · Posted: Sun Apr 06, 2008 3:32 pm Post subject:

Numpty

Poor thing! You will get sorted out, hang in there. I keep a cane handy at all times. I have three. One at home, another in my car and another at work. I never know when I'm going to have a bad day.

I've been pretty good for the last few weeks, but as of last week my legs and ankles have started to swell again. Despite everything I do to battle the swelling. I'm hoping it's just a flare and will pass.

If not then my medications have failed me completely.

A couple of suggestions if you are not already doing them.

If you have swelling of the lower legs and feet, go to the pharmacy and get some diabetic socks. The thick ones. Put them on before you even swing your legs out of bed. They do help to control the swelling.

Tensor wrap around velcro knee support brace. Easy to put on and take off. (stay away from the hindge ones they hurt) just the soft sided ones. Gives support to the knee while walking or working.

I wear mine when I'm driving walking doing the house work.

hugssss and let your doctor know the brain fog is not good. Perhaps they can do something with your meds.
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mnjodette · Posted: Sun Apr 06, 2008 7:18 pm Post subject:

So sorry, Numpty...that run around must be so frustrating! I just don't understand why a demotologist would refuse to biopsy a rash when SLE is suspected...that just doesn't make sense to me. I hope you find answers soon.

Jody
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"Always laugh when you can. It is cheap medicine." Lord Byron

sick n tired · Bear Cub Joined: 18 Nov 2007 Posts: 610 Location: Texas

Hey Numpty,

I am so sorry that you are having problems getting a firm diagnosis.

One question....what is a typical lupus case? And why does the dermatologist refuse to biopsy? Ooops..that's two questions. Smile

Find another dermatologist...does his refusal have to do with the national healthcare in the uk?

Your cpap is almost there, I hope that it works wonders for you.

Karen
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I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost