Hello. I am 32 years old and find myself lost in the sea of Dr.s. I have a positive speckeld ana, high sed rate, athritis, anemia, idopathic tachycardia and raynauds. I was sent to a rhumatologist, who drew a few gallons of blood. He would not diagnose me with anything, because the other tests for lupus were negative, and rA was negative as well. Today I find out after herniating 3 disks that I have moderate arthritis in my back with spinal stenosis. They will try steroid injections, if they do not work surgery is the next option. I am also set up with a cardiologist because of the increasing color change in my feet, and he cant find a good pulse.
Last year they thought I had a pituitary tumor because of a high prolactin level, but found nothing, so they treat that with medicine and I am ok there.
I have plenty wrong. My work is getting aggrivated at all my dr appointments. I have no diagnosis. If nothing is "wrong" with me why are all these weird things happening? Why is my body being eaten alive by arthritis? I know Lupus pateints by far re the most medicaly tested and most aggrivated patient because it takes years for diagnosis. If anyone has any insight on what may be going on with me, I would be appreciative.
Thank you!
Ms. Heidi let me just say "Welcome to the Club".
I'm not just trying to be funny here...it's true. Many,many here have gone round and round with this type of thing. Often it depends on the doctor. Some like myself got an RA dignosis the first trip in even with negative blood work....and others have spent years chasing a dx when they are obviously worse off than me.
I honestly believe certain doctor are quicker to form an opinion and start treatment than others. Why? That's one thing we are all trying to figure out.
I know I've been absolutly no help what so ever to you....but I wanted you to know you are not alone.
I hope you'll stick around. You'll quickly become attached to these very special people here that are in exactly the same boat as you.
Welcome aboard!!
Lovie
Thank you Lovie. I appreciate the response. I have just gotten to the point of exaustion after 2 years of Dr's visits. I started on Lodine which has seemed to help with the inflammation in my joints. This whole thing has bee so wearing. My Primary doc seems just as frusterated, he can treat all the symptoms, but what he is treating he is not sure. I just wish I had a name for the monster whatever it is, so 1: I know I'm not going crazy and 2. So I could let the people know who have to deal with me everyday at work and home, this is what I have, and that is why I feel this way.Dear Heidi,
I have a Lyme Disease diagnosis and it also tests positive -shares the same"band" (#ed on special blood tests)for Lupus-in fact many Rx believe that Lupus IS Lyme...if the antibodies are the same then the treatment is the same as well. Rhumatoid arthritis, ALS-or Lou Gehrig'w is also Lyme....get tested!! 70% of my PA county is est. at having Lyme-although most undiagnosed...just look at the #'s of dogs who have IT!! I also had carpal tunnel, exhaustion,Bell's Palsy, cysts,teeth problems,Raynaud's ,Xtreme arthritis in arm joints and wierd menses/PMS. My children all have it, as well as my husband and parents. My parents are receiving drip antibiotics through a "shunt" and my kids responded to oral antibiotics. Treatments (from 3 different Drs. bet. us all treated the lengthy time frame) lasted more than 2 years of antibiotics. Skip the doxy probably-and go straight to something like Mepron or Zipthromax for your advanced symptoms...it sounds like you have had the bacteria for years. Most of us never have a tick bite- and it is transmitted like Aids-through bodily fluids. acorns(tick larvae), white footed mice and deer, as well as all blood sucking bugs(even mosquitos) are now believed to transmit. Get medicated-quickly and see the miracles begin.My son can walk again and hold his urine! My daughter is beginning to memorize her coursework again! Interestingly my doc also began Diflucan-due to immune system depression from yeast/fungus....we'll see...we are all better and yet Lyme never goes away-just is maintained..find a "LYME LITERATE" doctor & remember the AMA states"treat the symptoms not the blood test"-often you test positive only AFTER the medicine kills enough bacteria. -best wishes. annettie
Hello, Like you,I have also been to many drs. and many specialists. I am now being seen at the Lupus Center at Upmc in Pittsburg...It has changed my life...But the road to get there has been long and hard,and will continue to be. Has anyone ever told you that yu have fibro? And have you empowered yourself with lupus info,like from the lupus site,and from here,taken the lupus criteria tests? I have found out that lupus mimicks so many other illnesses,and they are so intertwined,that i have what is called udctd...undifferented connetive tissue disease...along with a whole mass of other things that go hand and hand....it is truely hard to get a dx and go forward,and some of us just need that dx for clarification.....
If you sit with your dr and talk about your symptoms,and are being ignored,or they have no answers for you,it is time for you to move on.I hope some of this has helped you even a little bit...Hugs,Candy
I recently had a thallium stress test done on my heart because of an abnormal ekg. I had the persantine one where they inject you with meds to make it seem like you are exsersizing. I could not breathe and I had the worst Raynauds attack. My hands started to tingle and they went purple. Just a shot in the dark as i will get results on Tuesday, anyone ever hear of this??