[aitchel]

Hi there!

I presume I go in here! I'm someone who hasn't yet had a diagnosis, but could have one in the future - my family history is such that there are two generations of lupus sufferers (SLE, discoid). My ANA was also positive (negative anti-dsDNA, however, though may change).

The rheumies are not wanting to see me straight away, but said they certainly will do at even the slightest HINT of a symptom (to which I replied that I'd feel like a nag - surely the slightest little feeling of whatever shouldn't be something I go to the doctor for?).

Anyway, that's me. Just wanting to say "hallo". Hopefully I don't come back here with any (bad) news, but it would be nice to talk to others who are going through the same thing (especially for my age - I'm in my twenties, a uni student, and am finding this whole thing of probably-having-SLE-in-the-future quite shocking).

Hi

- aitchel

 

[fallinthruthecracks]

hi.

i'm going through that process too. nice to meet you.

 

[aitchel]

Hey

I have to admit, I'm finding it all really overwhelming. I've been told to keep an eye on my health, but the number of symptoms there can be (involved with SLE) that can correlate to just a simple explanation...my word!

Can I really head off to a GP if I have slight tiredness, headaches, etc.?

 

[fallinthruthecracks]

in my experience, unless there is something straightforward that there is a test for, doctors really don't want to be bothered.

 

[aitchel]

Well, I don't really find tiredness, headaches, etc.. all that new, to be honest. I'm a uni student p) and in addition to that, I had glandular fever twelve/thirteen months ago and am starting to finally feel like I have a bit of energy.

So it seems quite strange to me that I was told to just keep trying, to keep talking to the GP if I notice something.

 

[fallinthruthecracks]

that sounds really familiar to me

hope you get some answers soon...

 

[aitchel]

Thanks

How long have you been going to the doctor for, in regards to this?

 

[fallinthruthecracks]

2 1/2 years

 

[onetay]

Hi aitchel,
Glad you are here and if you have family with lupus then you know a lot already i would say. The doctors are saying at the hint of anything so they can start dx and treatment as soon as possible. There isn't a cure but the sooner you get treatment the better off you are i would say. Hang in there maybe you will escape the lupus and be the one to find a cure for us lol. I hope the best for you in the future and present.
Tammy

 

[LolaLola]

Hello Aitchel,
The Docs. are right to be cautious, my SLE came out after Glandular Fever.
Don't be too worried though there is life with lupus. Meanwhile given that you have had Glandular Fever are you getting any support at Uni?
x Lola

 

[aitchel]

In regards to help with studies, etc.?

Not really, but then I never needed it. They realised why I wasn't able to go to lectures, tutorials, etc.., but my exam grades more than made up for it (I was ridiculously over-compensating for having GF - to the extent I ended up being exhausted for months).

However, I've not been as bad recently, and my grades seem stable.

My only real concern is spotting anything new - fatigue seems to be one of the key things, but I'm kind of used to that already. I've just rang my mother (500 miles away) and I think the consensus is to keep an eye on everything, and if I get say...three/four symptoms or whatever, at the same time-ish, then maybe go to the GP.

Am keeping a diary of weight, and any health developments, etc..

I'm also being checked over for endometriosis at the same time! Have had a history of pelvic pain. Just found out on Tuesday that after 4 years, they're finally wanting to make a diagnosis. And it's endo., possibly . Add that to the whole "yeeeeah, you might actually, realistically, get SLE in future", and I'm not exactly feeling too great at the moment.

Slightly overwhelmed, actually . All in the same week!

 

[LolaLola]

Glad to hear you manage your studies-Well Done but do ask for extra time for assignments etc. if you need it.

If it is any help to you in looking at symptoms many of us find Depression comes first, then maybe hairloss or mouthulcers when we are approaching a flare. May be something you can watch for.
x Lola

 

[aitchel]

Well, I had quite bad depression before going to uni, though I still have occasions of it (though they are highly irregular nowadays and would be noticeable if combined with other symptoms).

As for hair loss, I have that anyway. Lots of over-colouring . I've lost a third of my hair within four months .

That's amazing though, thank you. I was saying to my mother that I don't know if there's anything out there for those who are on the lookout for lupus, but find that the symptoms to look out for are fairly common with normal colds, etc..

 

[halfpintfl]

Hi Aitchel, and welcome to this great site, you are going to love it here. Keep a journal of all your symptoms, no matter how big or small they may sound to you. You can always re-do the list later. The main thing you need to say, first to your GP, isthat: "but it is interrupting my
way of daily living." Like the fatigue that you mentioned. Mine was so bad that it took all I could do to get out of bed. I didn't want to do anything: cook, eat, get dressed. Then Is when you tell your GP and ask him for a referral to be seen by a Rheumatologist. But have all your
paperwork done and ready. It very nice to meet you and we are all here to help you with anything. So, be well, and smile--it confusess people!!!

 

[aitchel]

Does anyone know of any links between auto-immune disease and pelvic pain? I'm currently under investigation for endometriosis, and wondered if there were any links to SLE, etc..

 

[onetay]

hi,
Glad to meet you and hope that things work in your favore as sle is not an easy thing to deal with (as you already know from your family members). I am glad that you have decided to start talking with us now as things could change for you at any time and it seems you could us the support of the site. I advise that you keep a journal so you will have a reference so that you can keep track of even the little things that can add up when all put together. I wish you the best with your studies as it seems you have a great start to a wonderful career ahead of you (it would not be in finding a cure for lupus would it? Well, just a thought lol). Hope to see you in the chat room so we could talk more, in the mean time have a wonderful time at school and try not to worry to much about the lupus.