[Dora3]

Hi, I am looking for some advice. I recently have been several times to the doctors to be told I am run down, but I have several symptoms which worry me that fit the profile of lupus/hughes syndrome. It started with joint pain, blood clot on my foot and worrying memory loss. This has also been on a background of daily nosebleeds and IBS. I have had a blood test (FBC/RF and CRP) and all were negative and my blood pressure is low (90/60)with a low pulse (48bpm). I have been to the doctors three times and asked for all of this to be taken into account only to be told they are not related.
One of the reasons I am unhappy is that I have in the past had autoimmune symptoms (purple spots, discoid rashes, scleritis,intense headaches and fainting etc) and an ANA test was done (about 8 years ago which was negative). I feel like a bit of an idiot keeping going to the doctors only to get told there is nothing wrong each time, is this a common experience and what can I do/where do I go if my doctors keep telling me there is nothing wrong.
Dora

 

[LolaLola]

Hello Dora,
ANA tests are sometimes unspectacular, especially relatively early in the disease.
I would strongly suggest you follow this up, at the very least you need some symptom control whilst finding out what is wrong.

Do not feel that you are a hypochondriac or wanting to be ill because you have an empty life! Many here have been told such dangerous rubbish before a competent Doctor diagnoses them, so you have the benefit of their experience.
Best Wishes,
Lola

 

[onetay]

Dora,
hi, I have a few questions it you don't mind please. When the dr said that these things were not related, Did you as oh then there are several things going on with me? Where do we go from here to find out what is going on and how to treat it? Do I need to see a specialist for any of these problems? This will put your dr on the spot to follow up with finding the problem or refer you to someone that can help you. I would also encourage you to keep a journal of all your symptoms and when they started. I would also advise you to keep some kind of notes about your dr visits so you know what has been done and ruled out. If this dr is unwilling to help you it maybe time to find a new dr that will help you find the answers. I wish you luck in finding your answers and you are not crazy there is something going on and is important for you to keep seeking the answers you need and deserve. We are here if you need us and please let us know how things are going with you.

 

[debatat]

Hi Dora

Welcome to the site. You have already been given some excellent advice, I agrre with the others in that something is clearly wrong and you need answers and treatment. Keeping a journal is an excellent suggestion also writing a history of your symptoms, in the order they occurred is also helpful. Maybe you could take someone else with you when you go to the doctor to help you. Have they ever offered explanations for your symptoms such as nosebleeds or the blood clot and memory loss?

Dont give up!!! You know your body best and you know when something isnt right! Let us know how you get on.

Deb

 

[Maia]

If you haven't been to a rheumatologist yet, then I'd get a referral to go there if you can't just schedule the appointment yourself. If you've already been to one, then check around on the site to see if there are any doctor recommendations in your area already (or ask on the Find a Doctor Forum). Sometimes finding a good rheumy can take a while...

Have they testing you for any of the clotting antibodies or genetic causes of a tendency to clot too easily? With a documented blood clot in your foot it seems as if they *should* have but you never really know sometimes unless you get copies of the bloodwork.

It's interesting because the symptom that really started my path towards a lupus diagnosis was an apparent blood clot in a toe (swelled up 2-3 times normal size for no reason and was bright red and very painful). I had had a few issues with my health prior to that including what was thought to be rosacea & a few bouts with pleurisy, but otherwise I hadn't complained much about my health.

Shortly after that toe thing, it went downhill very fast though with long term fever, joint pain and just feeling terrible for weeks/months. Fortunately, my doctor put things together quickly & asked additional medical history questions (about mouth ulcers and sun sensitive rashes) and ran the tests necessary. Even more fortunately my ANA was positive right away.

Others take a long time for their bloods to show anything though. With continued symptoms, it becomes even more important to stay on top of these doctors and insist for additional testing each year or more frequently. Things *can* and do change, and just because 8 years ago and last year a few tests were negative, it doesn't mean you don't deserve additional follow-up and testing and investigations.

Good luck and welcome to the site! I hope you get some answers and help for your condition soon - whatever it may turn out to be.

 

[Dora3]

Hi, Thanks to you all for your replies. I have had previous problems with help from my doctor. I have been refused treatment that the hospital have said the doctor should be arranging for me (referral back to an allergologist) instead I have been told 'there is nothing for you here ' and I have been told 'not to be such a baby'. Throughout the whole 4 years I have been with the surgery I have found the whole experience at best depressing and at worst I come away feeling like I am just a nuisance patient with nothing wrong. It has never been anything better than talking to a brick wall.
Instead I will change my Doctors. I however want you to know that your support has been invaluable at this time as all I need is for someone to take me seriously and the rest I can do myself even if takes a long time.
many thanks
Dora

 

[Dora3]

Hi maia, yes I have also been told the redness on my face is rosacea which is aggravated by sunlight, and been given many things to clear it up and currently I have chest infection which has lasted for over a week with fluid on my lungs and i suffer from mouth ulcers (although currently I dont have any). No study has been done into the clotting ability of my blood other than an FBC which came back normal, however I have had some blood typing for HLA antigen (HLA-DR4 which I believe is a marker for lupus)because they thought I might be narcoleptic as I was tired enough to fall asleep in the supermarket and conversations with people for many years. I also believe I have had a clot on my lung a few years ago as they detected a shadow on my lung after I complained of pain in my lungs but when they went back to the next x-ray it had dissapeared along with the pain. I will be changing my doctor as I have said in the last thread but your story has spurred me on to be persistent as I tend to get disheartened by going to the doctors all the time to be told its nothing to worry about or it will go away.
Thankyou for taking the time to reply and support me it is much appreciated.
Dora