[mamastoater]

ANA test was positive, Pattern was nucleolar, the first rhumatologist mentioned lupus, I was given steriod injections in my wrist and shoulder, which helped movement for a while, next appointment I saw another collegue who prescribed mepercrine for fatigue, this was great for a while, I asked my gp for the rhumatologists report and was told i had vague joint pains! no mention of the severe headaches, shakes, swollen glands, pains in the eyes, stomach pains, chronic pain in my knees, feet, hands, night sweats and fever and a lot more, this has been ongoing for ten years since my face took an allergic reaction to the sun. I have no quality of life, I dont go out, I just feel that they forget it is a human being sitting on a chair before them (rhumatologists). I wrote and asked for all my blood tests for the last five years and I found the positive ana test forgotton in my records, I mentioned this to my rhum, and he laughed and said lots of people have this and nothing is wrong! am I going mad?

 

[lazylegs]

Hi Mamatoater,

Sounds like you should ask your GP for a referral to a new Rheumatologist since you are unhappy with your treatment.

It is true that people in the general population can have a positive ANA test and not have Lupus. That said, it doesn't mean the doctor should stop looking for the cause of all your symptoms. I would keep pushing.

Do you see a Rheumatologist regularly? Is your blood retested on a regular basis? Are you actually diagnosed with Lupus or not?

Take care,
Lazylegs

 

[Katharine]

Hello there and welcome!

Nope, I don't think you're going mad though I think many would at less. It sounds very much as if a second opinion at the very least is in order.

Are you still on mepacrine? If you only have as he says "vague joint pains" why were you put on it? It seems odd as most rheumatologists won't treat people unless they are pretty convinced that people have an auto-immune disorder. He must ave thought that something was going on that merited the mepacrine.

I would be just as angry and upset as you are and determined to find answers. What does your GP say about all of this?

bye for now,
Katharine

 

[LolaLola]

Hello, no it is not all in your head. You need a Rheumy who specialises in Lupus. You would be surprised to learn that some have never seen a case of it.
The pains in eyes, I used to have them. I take a lot of treatment and it took a long time to get diagnosed and onto the right mix of medications-but it is worth it.
x Lola

 

[helloos]

It is horrible to feel like you feel right now about your doctors not helping you and not taking you seriously. I think we have all been to a doctor like that and you have to keep fighting for your health. You are right, they won't go home thinking about us, we have to think about us and take control of our treatment. I agree with the others, time for a new rhemo if possible. If not possible, then I would try to bring someone along with you next time to the appointment that maybe can help tell how you are feeling and functioning. I hope that you feel better and are able to see a new doctor.

 

[Douglas]

I am sorry for your experience but a number of us know that we have "suffered much at the hands of physicians". My GP was great but the rheumatologist must have studied at the "University of Studied Indifference". Thank God my GP knew his stuff (Dx'd me after over three decades of symptoms and lots of guesses but no one ever nailed it as SLE) and although he has now retired he handed me on to another competant and caring MD.
May things improve for you!
Douglas+

 

[mamastoater]

:worried: Thanks for your comments, first rhuemy said it was lupus, his colleague smiled and asked "where"? I felt embarrassed and stupid! :blush: My gp cant understand this and I am now awaiting a second opinion. My joints are so sore, the headaches impossible to deal with at times, but the worst at the moment is an electric buzz from my head down my arms followed by a high temp, my daughter dropped a knife and I felt like someone had just shot an electric current through me, it wakes me up at night. my CRP is 5, I have protein in my urine and blood but no infection, my alkaline phosphate is very high as with my creatine levels. My legs keep cramping at the calfs along with my feet. I am wearing splints on my hands which helps slightly. I am fifty next year and I am determined to find out what is wrong. It is shocking that people are treated this way.:blush:

 

[Lily]

Hi there,

I'm sorry you are suffering so much :hug: What does your GP say about the urinalysis results and that creatinine? I think it would be worthwhile to see a Nephrologist with those problems. It may even aid in a firm diagnosis.

Are you still taking the Mepacrine?

Good luck finding another Rheumy. It's not clear why you have stopped seeing the one who prescribed the Mepacrine though? He must have thought you had Lupus if he put you on Mepacrine, they don't prescribe it lightly. If your kidneys are involved though it won't be enough and you will need to add something else for organ involvement.

love
Lily