[Biff]

I am 53yrs old female and have came across yhis site whilst trying to self diagnose my problems the lists being - frequent eyelid and skin infections like
Rosacea (treated with Tetracylcline) severe pains in my bones and aching like the flu - an increase in alergies to certain foods ( I get red weels on skin and aometimes itching of skin) and medicines - severe
tummy pains after certain medications as if I have an ulcer - night sweats and even during the day I seem to fever and sweat - at the moment I am taking Tetracylcline for my skin and it does seem to keep it at bay but if I go out in the sun my eyes get sticky and pus spots develop - after looking at the site it seems to tie in with Lupus my doctor is trying to treat me for arthritis but I am having problems with the medication as I get severe tummy pains - she has just done blood tests and included an Anti Nuclear Antibody test but I will not get the result for 2 weeks - does my symtoms tie in with other Lupus sufferers and if the test come back negative what do I do next!!!!! I am also on an Asthma inhaler subutomol an bezofluroide for High Blood Pressure

 

[Katharine]

Hello and welcome

I think it would be very worthwhile taking a good look around at certain areas of this site. Firstly, the information on diagnostic criteria that you will find at the top of "not yet diagnosed" and also the post about the "dangers of self diagnosis".

The problem is that lupus problems are so varied that is pretty much impossible to say whether your problems might be linked to lupus or indeed any other auto-immune disease. Lupus is called the great imitator as it can imitate so many diseases. Also, in auto-immune diseases many symptoms can overlap so finding what's going on can be very difficult.

It sounds like you have a good doc if she has run the ANA test. It is used as a basic screening test for auto-immune diseases and if it comes back with a high positive titre then further tests need doing to try and determine which auto-immune disease.

Really the answer to your question is the same whether it comes back positive or negative. Even with a positive ANA, the road to diagnosis can be very long and you need to arm yourself with great patience and determination. You will also need that if it is negative. Basically, you know your body and know something is not right and you need to keep going back to the docs until you get answers.

Can I ask if you have seen a rheumatologist? It sounds like a referral might be well worthwhile if your current doc hasn't been able to treat you effectively.

If you're looking for a good lupus/auto-immune disease specialist, there is a "find a doctor" section here where you can get recommendations. Good lupus doctors are few and far between and even many rheumatologists still have a lot to learn.

Do be careful about finding answers on the web. There are a lot of ways to scare onself half to death out there with all these self-diagnostic things and to be honest if a search engine could replace a doc, why would they study so long? You also need to watch out for out-of-date info. Anything over 5 years old should usually be discarded. Also watch out for any commercial sites. Usually, if they're selling something, they're not the best and most objective places for info.

hope that helps a little bye for now,

Katharine

 

[Biff]

reply to Katharine

Hi Katharine

No the doctor has not referred me as yet I went to the surgery on Friday and asked to be referred to a specialist as I cannot take the pain in my body anymore - she asked if it was my joints or muscles and I replied it was my skeleton !!! that is because the pain is not localised to any area I had pain at the time from my neck, shouleers down my arms knees not too bad but my ankles and feet get painful too it has become unbearable she has given me several medications and asked that I wait for the reults of the blood tests before she refers me - the medication she gave was strong c0codamol ( make me vomit), Amitytyline not for depression but she says that sometime this helps with pain andCelevrex for reumatics, the Amititpyline makes my mouth very dry and I feel my hearth rythm changing, but the dry mouth is the worst, the Celebrex affects my stomach - thanks for responding Katharine I just feel so alone in my suffering at the moment and feel so sorry for myself but I suppose I should lighten up as 'things are never so bad that they could not be worse' i.e. I should be thankful I have not anything worse

 

[dudley]

Hi Biff and welcome,

As Katherine said lupus is the great imitator. There is no test that says...yes you have lupus. The one thing I found out from the beginning was to never DX myself. I also found out that you need a great rhummy for lupus. Yes the blood work will give doc a road to follow. Amitytyline is used as a long term pain killer especially for fibromyalgi. It does not work over night. Tell doc your reactions to the drugs. I wish you a DX ASAP. I also hope that it is not lupus

Elaine

 

[Katharine]

Hi again Biff,

Don't worry, it is not a question of lightening up. If you are in pain, you need attention and only your determination will get you that.

I would ask your doc for a referral whether that ANA test is positive or not.

Feel free to come here and ask questions. Feeling alone with all this makes it so much worse.

Katharine

 

[LolaLola]

Dear Biff,
Pain is hard to live with and your tummy is upset too. Don't be hard on yourself. No one here expects you to be anything other than who you are. Diagnosis can take a long time. If you do have Lupus or similar there are plenty of meds. to help but again it can be a bit slow. What I am trying to say in a clumsy way is that if it is Lupus there is every hope of improvement but you will need to be patient.
x Lola

 

[halfpintfl]

Hi Biff,you have been great advice, but, yes you have to be carefull not to try to diagnose yourself. I smiled when you wrote; "my skeleton", that is what I alwaysthink but very seldom say, but how true it is. Knowledge is power, and at the front of this site, before you come to the message boards, there is a mountain of up to date info, that will you understand an awful lot. I really want you to know that you
are not alone, never. I know that a lot of times I feel like everyone thinks I am nuts, but here, at this site, it doesn't matter wether I know the person that answers me or not, I
am always made to feel important and that people care. At
this site everyone is here to help and support everyone else.So, post anytime you want or need to and with any question, it doesn't matter what, we are here to help you.
Be well and smile:wink2:​

 

[Biff]

Thanks for caring

Hi again- I still have not had a diagnosis as I am awaiting blood results - my doc asked me to return for more which I did last week but they will not be back for a another week - I am still trying to obtain info as to why I am in so much pain - wrists and ankles are the worst today - I was searching for info when I came across info on Oxytetraclyne and its contraindications - it says that this med can make SLE symptoms worse and as I have been taking this med for a long time now for acne rosacea and blepharitis I am beginning to wonder if this has been at the root of it all - does anyone else know if this could be the problem or have had problems with this medicine

 

[Lily]

Hi Biff,

A quick look on a google search revealed that some cases of Lupus are made worse by using tetracycline. Sorry I have no first hand experience.............

love
Lily