View Full Version : So I am crazy?!? My primary thinks so and the Rheumy was no help

Crazy Jen
10-18-2011, 09:16 AM

I am beginning to think I am crazy. I have a friend who is convinced she is ill. She is certain she has cancer or any other disease she hears about. I always think "God, I never want to be like that!" she has had more tests than my father who did pass away from cancer ever had and all normal. So now I am starting to think I am her. I will give facts of what I have been diagnosed with: occipital neuralgia, cluster headaches, vassculitis, torn rota tor-cuff w no injury, AC joint inflammation; inflammation of the sacryalic joint, elbow, hip, sternum and ribs. Maybe I am missing a few, but this is what I can recall for the past three years. I have been diagnosed with dry eye, psoriasis type rash of the scalp and nail beds. In addition, I am positive ANA and CRP from 10-46. My sed rate has been slightly elevated and normal at times. I saw a rheumatologist yesterday and he said I had what he believed to be a malar rash. He wants me to see a dermatologist for it to be confirmed (appt is Feb. 2012- AWESOME!) I was sent to the rheumy because my physician assistant at my primary's wanted my feet looked at. They turn a purple, light blue color and then red. They burn when I put them in warm water if they are this color and my hands/fingers get a very bright red and burn when I am in the cold for more than five minutes. The rheumy said that my ANA was 1:180 once and then 1:640- he wants to test it again and see if it is still positive. if it is higher than 1:180, which he does not consider positive, then that may indicate Lupus to him. However, if it comes back 1:180 this time he thinks I am fine. Never mentioned what to do with the feet colors or any of the other symptoms I have. I get very sick from being in the sun. I love the sun, the sun does not love me. I get very sick later in the day or the next day- but I don't get sick instantly while out in the sun. I have tested positive and negative for Lupus Anticoagulant. I have weird rashes on my arms. Little dots that get scaly and itch. But I also have started to get weird dime sized blue/purple dots on my arms. It almost looks like someone grabbed me and caused severe bruising with their fingertips. However, I know this is not the case. They do not hurt, and never fade yellow like bruises do. My primary is convinced I am nuts or drug-seeking. I do know this. I will say yes, I do see her a lot for pain. However, when she FINALLY runs a scan to see if anything is wrong, every test has come back with an issue. So she has yet to see me for "mysterious pain"- you know pain without a finding at some point. But she still treats me like I am nuts or drug-seeking. The only thing she has seen me for with no answer are my sore throats. She herself has says my throat is swollen, inflamed and red, but strep tests come back negative. But she can see my throat is not normal when I do go to her. I am concerned because although the P.A. in her office referred me, because I think she realizes that although I have a lot of issues they have all come back with a valid reason, my primary had reached out to the rhuematologist and I think he didn't take me seriously. His visit was so short and basically he just wants to base it all on blood labs. I just find it hard to believe he could look at me and say my rash definitely looks like a Marla but then dismiss me with "my nurse will call you after I see your labs" Is this the norm, or am I crazy Jen. Am I that woman that I think to myself I never want to be? Do I just need a good shrink? Also, I have lost hair in the past, but it did grow back. My hairdresser can commented that she could see patches of hair growing in. I was told that if it were Lupus my hair would NOT grow back, but I have read different things about this. I read the criteria for diagnosing Lupus and I 100% fit that so I am not sure why this is such am ongoing issue- unless I am just crazy?!? Any real experiences or stories similar to this, or advice would be very much appreciated. Thank you! Please, by all means- feel free to tell me I am crazy. :-)

10-18-2011, 05:17 PM
Hello! By the Ana result numbers I gather you are in Australia. I have sympathy for you as I have gone through your stage. All I can say is change your GP to get someone you can talk with, and what I have learnt that most auto immune diseases need to mature before they can be diag, even if blood results come out 1:180 most Drs won't diag on that as many believe that it must be 1:640 or more. Sometimes this maturity of the disease can take years and it will be so very frustrating. My best advice can be how I coped and that was to accept that a name was not going to make me any better, but how I approached each day and didn't waste any more energy on struggling with the problem of a name did make my day. I enjoyed every moment I could accepted the pain lumps fatigue etc and challenged my energy on planning out my day and week making sure I had the energy to have a very enjoyable life. Eventually by chance things came together all without my worry. I hope your trip along this long and bumpy road is as short as possible!

Also I found out not to do my blood tests when my flare was not there and I waited until my next flare came along. This I found was less confusing for the Drs and provided blood results that were comparable.

10-19-2011, 12:08 AM
hi jen.
sorry you are having a hard time.

remember that when you are paying the bills the doctor works for you.
if you cannot talk comfortably with them, or they do not listen to you......
then fire them, and find a new doctor.