[mumof3]

I am newly diagnosed and since coming on this sight have learnt lots of useful infomation , however , things that i thought were just normal problems now seem to be the norm for lupies. I have dry itchy eyes, and a lot of the time a dry mouth. I get pins and needles and numbness in my hands and feet. I suffer with major headaches. My daughter was born prem and needed special care. For about two years now i have noticed my hair falling out, not to the extreme of bald patches, but enough to worry about. I have a hospital appointment on friday, do I mention these things? Would appreciate some advice. Thanks.

 

[Lily]

Hi mumof3,

Yes I would definitely mention these problems at the hospital on Friday. It's important for a doctor to ask or a patient to volunteer a full medical history when investigating Lupus. Most of those things you mention are relevant to a possible Lupus diagnosis.
In fact it's unusual for them not to have asked about at least some of these things during your diagnosis. Was it your GP who diagnosed you?

It's true that many of us ignored a lot of these things and didnt connect them until one of our docs mentioned lupus as a possibility and we started educating ourselves. I know it was for me.

I contacted my local Lupus Association whilst waiting to see a Lupus specialist to get some more info after another specialist said he thought I had Lupus. When they sent me the leaflets I could tick off about 8 of the 11 criteria much to my amazement and horror at the time. Who knew all these things might be connected in some way Certainly none of my docs had put two and two together or even asked me about any of them.

It was a different story when I got to the Lupus doctor though, he asked me about all of those things and delved far deeper than most other docs had. Which is the job of a Lupus specialist after all So if your docs don't ask then make sure you tell them.

Good luck with your appt. and let us know how you get along.



love
Lily

 

[mumof3]

Thanks Lily. I have not yet seen a lupus specialist, i am seeing a dermatologist at the moment for my rash, but am hoping to see one soon. Thanks for the advice. Mandy

 

[Clare.T]

Hello Mandy

Some dermatologists will run all the tests for systemic lupus and also ask for your health history and so on. Otheres will refer to a rheumatologist for assessment of systemic involvement.
Since they are sure lupus is affecting your skin they should be talking about treatment ASAP. Don't let them fob you off - ask about checking for systemic involvement and insist on an early appointment with a rheumatologist. If they have already done some testing, find out what they have tested and what the results were. Make sure urine has been tested - the GP can do this and also do a full blood count and an ANA, which is the basic screening test. You can say that you are concerned about the possibility of systemic disease and you know you should be checked for it and don;t want to hang about waiting.

I think I may have said before that I can't see what practical difference it makes which UVA you are sensitive to, although it is an interesting academic study.
You should prepare a health history leaving nothing out even if it seems irrelevant to you and of course a list of more recent health problems.

Read through the two lists of diagnostic criteria to see what you can relate to.

When chronic health problems of close blood relatives is known that can be useful information too.

There is no reason why they shouldn't start treating you with Plaquenil the usual first medicine for both skin and systemic lupus. The skin should start showing improvement within a couple of months.

Soemtimes people with skin lupus have a variety of complaints like joint pains even when they have no blood work to support an SLE diagnosis. The Plaquenil helps to stop the disease worsening.

Don't forget that UV exposure is year round regardless of external temperature. One type, the UVA, comes through cloud cover too and some comes through windows. I have found a problem in the UK with the variability of the weather in the course of a day so I wear sun block all year round indoors and out, and take my hat with me.

You can get sunblocks on the NHS so ask your dermy to write to your GP recommending it. I like an Aussie one called sunsense. It is easy to wear and isn't visible.



Good Luck
Clare

 

[mumof3]

thanks for the advice clare, i have written it down, and am now going to do a note with all the information i think is relevant to take with me tomorrow. will keep you posted.

 

[ALWIN]

Hi mumof3

I think you have had good advice. It can take a long time to get sorted out and the more information the doctors have about your symptoms the better.

I thought my diagnosis was sorted out - still might be - don't know yet.

However, I initially saw a neurologist who linked the pins and needles in my fingers to my headaches (I did get some visual disturbances too) . He reckoned it was migraine and gave me a small daily half dose of a beta blocker which, whether the migraines were caused by Hughes or any other autoimmune disorder or not, DID work. I have had 2 - 3 in 12 months instead of 3-4 a week.

This drug was started months before Plaquenil. Plaquenil has produced other improvments including FAR less muscle / joint pain and more energy as a result.

My dry mouth, eyes, etc. were put down to Sjogrens. I live with it as the symptoms in my case are mild.

I'm trying to point out that you can end up with more than one diagnosis, and it can take time to unravel them. I am still unsure about the lupus diagnosis because I do not understand how it is made without positive bloods when other illnesses can cause similar symptoms. Having said that, I would not swap my medication for a the tea in China!

Good luck and I hope you get appropriate help and all the right tests done soon.

Take care

 

[mumof3]

Thanks Alwin, i have compiled a list of my problems, and have also contacted my natural auntie ( i am adopted)so as to get some info on the family history.
Just want to gety sorted so i can enjoy playing with my kids again, especially my 7 month old baby girl Scarlett.

 

[mumof3]

Test results.

I had appointment with dermatologist today, I definetely have discoid / cutaneous lupus, and have to see rheumatologist to assess me for other symptoms for systemic. i had all my blood tests back and they are as follows:
Kidney function normal
Liver function normal
Full blood count normal
ENA negative?
ANA weakly positive:worried:
Anti ds DNA 88.:worried:
ARE these good?
I have to wear sunblock at all times when outdoors, ( no more suntan for me, now ill be whiter than my ginger hubbie:lol: )and have a nice strong steroid cream for my skin, and now just waiting for appointment with rheumy.
mandy

 

[jane1]

hi there....i hope this has put your mind at rest a bit?.....im still waiting for my skin punch biopsy.....lets hope you get your rhemmy apt soon and get things sorted...all the best jane

 

[mumof3]

Hi Jane, thanks, Hope all goes well for you , waiting is a pain, but hopefully they will sort you out pretty rapid, Mandy.

 

[Lily]

Hi Mandy,

He's run some of the tests for Lupus, the Rheumy may run a few more like tests for clotting antibodies (make sure you mention your killer headaches) and complement levels.

The ENA test (Extractable Nuclear Antigens) is a group of tests that have about 5 tests to different antibodies in it. It sometimes helps them pinpoint which connective tissue disease you have, however not everyone tests positive to any of these antibodies.

The ANA test is the first baseline test for any autoimmune disease and is positive in about 95-97% of SLE patients at some time.

The Anti-DNA is very specific to SLE and is often associated with kidney disease (it's good your kidney function tests are fine right now ) . The numbers can go very high and they often keep testing this one to see if there is a rise in it meaning more disease activity. However blood tests are only so good, there are people here who have this antibody and have never had any problems with their kidneys whatsoever. It's helpful for diagnosis though and it's useful to know you have it and keep an eye on it.

It sounds like they are getting onto this fairly quickly which is good, I hope your Rheumy appt is not too long a wait :hug: It's terrible being in limbo but you are getting closer to sorting this out.

Here's a site with common blood tests used to help diagnose Lupus and associated diseases:

http://www.arthritiscentral.com/index.php

There are also a whole lot of other sites to do with lab tests pinned at the top of the Tests and Procedures Forum. This is but one of them.

take care,

love
Lily

 

[LolaLola]

Hello Mandy, It was good to meet you in Chat. Hope we meet there again. I am in there most nights at that time.
x Lola

 

[mumof3]

Hi Lily, thanks for that, didn't have a clue what any of it meant but that really helps.Lola i t was nice chatting last night, I am awake most nights that time( muscles don't like to let me sleep ) so will probably meet you there again soon.
Mandy