View Full Version : Might get a new rheumie

08-26-2009, 04:29 PM
So, I posted awhile ago about muscle spasms in my back. They would come and go, but lately they have been so bad and I have started having numbness in my arms. I finally decided to call my rheumie.

Well, the nurse said that he would want to see me, but he wouldn't want to see me until I had an EMG and NCV (?) done. Because I have Tricare, I have to have those done at the Navy hospital and so I should just make an appointment to get those done. So, I call and make an appt at the navy hospital. The doctor I saw was one that I have never seen before. (That is pretty typical. I usually see someone different every time.) I was in so much pain that day. My doctor was pretty sympathetic, but she wouldn't order the tests that the rhuemie wanted because apparently in the 18 months that I have been seeing him, he hasn't sent over any notes of substance to my main medical record.

She asked me what he has told me about my condition and I said, 'pretty much nothing'. She was extremely frustrated. She apologized for not ordering the tests and for not having any answers for me which I did appreciate. She said that she was going to review my medical record and try to get me another rheumatologist. I couldn't believe it. I am glad that I might get a new rheumie, but I feel like I am starting over from scratch again. She ordered another ANA and Vitamin D and a bunch of X-rays and I am supposed to see her in 2 weeks. Hopefully, I can see her. It is very difficult to see the same doctor. I am curious to see what happens with that blood work. My first one was positive (from the navy hospital) and my second one (from the rheumie) was negative. Let's go best 2 out of 3, shall we? lol

Now, I have to call my rheumie and tell the nurse that I didn't get the test done and I guess just sit in a holding pattern for awhile. This doctor did prescribe me some methocarbomal which does help the spasms some, but it makes me extra tired.

Anyway, I just wanted to share. I really hope that I get a new doctor, and the fact that she is going to try and get me a new one without me having to beg for one is remarkable.
It is always just nice when someone believes you.

08-26-2009, 06:08 PM
hi busymom3

thank goodness for small miracles....i hope this dr. is able to do what she said she would....also, i think it is great that you can return in only 2 weeks...so many times we have to wait for 2 months.

i hope you rest peacefully tonight.....you deserve even more good things.

09-06-2009, 07:53 PM
Thank you for your reply, mountaindreamer.

My doctor called me back this morning. (Yes, on Sunday. Strange) My X-rays came back normal, but my ANA came back positive (1:640 again) and my vit D levels were low. She is going to put me on a mega 50,000 mg/week for 8 weeks. Then retest my levels.

She doesn't know what to do for me. I am not going to get a new rheumie after all. She is under the impression that my rheumie does not believe my issues to be rheumatological so she is going to send me to a neurologist instead. *sigh*. I have the numbness down my arms and hands. I am thinking that it is the Thoracic thing that was talked about on the other thread. I really don't care to go to the neurologist.

This whole thing started because my rheumatologist wanted some nerve test done, but becuase I have Tricare it has to be done at the Navy Hospital. Well, my pcp will not do the test because she won't order tests that other doctors request (I don't know. It is frustrating) especially since my rheumatologist has been less than forth coming about any opinions.

I am pretty upset tonight because after finding out about my dad's diagnosis, I just don't want to go through my life feeling like garbage just to find out in my 60's that I had something the whole time but it just wasn't bad enough yet to be determinate. I could just say to myself that as of now I am fine and to live my life to the fullest. I am trying to do that, but I just don't feel well a lot of the time. I am frustrated, my husband is frustrated, and my sister is telling me I am gluten intolerant. Who knows? Maybe I am.

I think that I have decided that I am just not going to talk about it anymore. I feel safe venting about it here, and now, maybe to my dad, but I just don't want to be in this "I know something is wrong, but no one believes me" place anymore. I do put on a happy face. But, I don't feel comfortable talking to my "safe" people anymore, either.

Can someone have a positive ANA and not have anything wrong? Why did she run this test again anyway if she wasn't going to use it for anything? If it doesn't mean anything, why did she run it? Maybe I will feel better after I get some good D in me.

Thanks for listening. I think that I am at an intersection, and I need to figure out which way to turn or just keep trucking on the road that I am.

09-08-2009, 01:59 PM
hi busymom,

i agree with you...why order tests if nothing is going to be done with the results. You say you don't want to see the neurologist....have you seen him before?

life with lupus is a constant struggle with new symptoms, new tests, new results, new pain, new drs. and new treatment.....we learn to cherish the good times.

09-08-2009, 05:52 PM
Hi busymom,
I am just seeing your thread and the earlier conversations now and it sounds like you have been having a rough go of it. I am sorry to hear about all you are going through. I remember having to go to the base doctor as a kid and never knowing who your doctor would be that day and being shuffled around to a new doc each time I walked through the door. I hope that this new doctor is the one you are able to see when you go again and that she finds you the answers you are seeking. It's a shame that the other doctor didn't communicate your medical history with the navy hospital. I have had that problem in the past. Now, every time I go to a doctor and get new blood work, labs, xrays, CTs, anything done I specify with the nurse and the doctor and also the receptionist that I want a copy of all my records sent to my PCP and my rheumy. I also make sure to obtain a copy for my records so I have it all in one place and also so that if I go to a new doctor, I can bring my entire record with me. You have a right to obtain a copy of your medical records from that doctor. I would suggest that you ask that rheumy to forward your records to your PCP and if they fail to comply, ask for a copy of your medical records so you can personally give them to the navy hospital. It's a shame that the rheumy has created all this red tape for you and I hope you are able to cut through it soon.