[Determined1]

I was dx with Lupus in 01. Since then I have seen several different drs in different states, due to moving around for my daughters medical needs. I tested pos for mono back then and had a mini stroke. Later I developed seizures and all the symptoms that come along with lupus except the skin rases and leisions. All this happened after I had a hysterectomy. I was tested for MS last year, because of painful wrists and hands with headaches, leg pains, kidney problems and CNS problems. They didn't believe me that I was dx with Lupus. They did the brain scan and found plaque but never diagnosed me with MS. Said it could take 2-3 yrs before they were sure. Now, I told them I was dx with Lupus, no one listened to me nor did the blood work to check for it. They checked for anemia, lyme and kidney funtions. I was aniemic so I started getting shots. No lyme, but kidney functions were border line. I have had a terrible flare up for the past 2 months now and it is worsening. It has affected not only my kidneys, protein in my urine for over a year now, but my heart as well, I have inflamtion in my heart muscle. along with cog functions and the usual leg, arm, hands, feet and back pain. What should I look for when the dr sees me next week in my blood work? Could I test neg and still have lupus like they dx me in 01? And now that I am back with my original dr taht dx me in 01, I am questioning all the testings because of what other drs have said and done... Today I also developed itching! My legs are itching like crazy after a bout with numbness and prickly tingling in my legs yesterday. I feel it is getting worse and I'm scared I am going to suffer perminent damage if something isn't done soon...

 

[Katharine]

Hi there and welcome

Er, does all this mean that over all this time you have been receiving no treatment!?

I don't know if your GP is among those who doesn't believe you. If he is, then I'd say the first step is to change GP and to explain clearly to the new one what you expect from him/her (i.e. that he/she listen).

I would then make sure that you get a referral to a rheumatologist experienced in treating auto-immune disorders. You can ask for recommendations in your area in the "find a doctor" section of this board.

I don't know if contacting the doc that originally diagnosed you is an option. Maybe he could write a letter to your GP stating how important it is that you get treatment?

I'm afraid I really don't have any other advice to give. You already know that you musn't give up.

hugs to you :hug:
Katharine

 

[Katharine]

P.S. I am an ANA negative lupus sufferer (diagnosed through skin biospy and clinical signs) so it is possible to be ANA negative and still be diagnosed. Unfortunately some docs are very hung up o blood work. An experienced rheumy should be looking at the wider picture.

 

[LolaLola]

I WAS ANA negative for years. My bloods eventually changed. but I had already been started on treatment. Having Negative bloods in no way means you are less ill than others. I was really bad in those days.
Also not evryone has much in the way of skin manifestations.

If you did have Lupus it will not have gone away!
Good Luck,
x Lola