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05/16/2010 04:55 PM

need clarification from you all

Emoney
Emoney  
Posts: 26
Member

I am seeing my doc the end of this month, and wanted some clarification before sticking my neck out.

5 years ago, when I only had facial pain, a neurologist (the local SLE expert) ran tons of bloodwork. I was normal and negative for the screening antibody test for lupus.

Since then, my symptoms have greatly progressed, and I'm diagnosed with FM. I am having "secondary" symptoms like the sweating spells and swelling/ aching in my hands/ feet.

Question- Could I still have lupus? Should I push for more comprehensive bloodwork? Could you test neg for the antibody and then, a few years later, test positive?

My friend is pushing me to find a rheumy or a neurologist to manage my care- but I know my D.O. very well, and she is current on chronic condtions and treats many chronic pain patients. Is there a benefit to seeing a more specific doc? (Keep in mind that in 3 years I saw 2 neuros, 1 neurosurgen, 1 rheumy, 1 allergist, 1 ent, and I'm sure others, but before I had these symptoms and my fibro dx.)

You all are amazing!! Hope from my computer screen! You are all in my prayers, as are the docs who care for us!!!

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05/16/2010 06:00 PM
Adewyn
Adewyn  
Posts: 5733
Group Leader

it does hurt to ask...if you feel there is a problem then ask your neuro

good luck and let us know what they say


05/16/2010 06:02 PM
oregonnative
oregonnative  
Posts: 5777
VIP Member

Emoney, If your D.O. is a good listener and stays up on these things, and especially if you trust her, stay with her unless or until

your needs aren't being met. Always be your own best advocate. You know your body better than anybody else. Push for further blood work if it's what you feel you need. If after a time you feel you aren't getting the treatment you need, then condider seeing a rheumy who is experienced in Fibro treatment. These are purely my personal thoughts on the situation. Best of luck whatever you decide. We are here for you always. Let us know how things go. Hugs, karen


05/16/2010 08:20 PM
raynedae
raynedae  
Posts: 8219
VIP Member

I was dx'd by a D.O. and I loved her...she had lots of fibro patients and so stayed current on the subject. She also gave me these incredibly wonderful adjustments that got rid of a lump I'd had on my neck for more than 20 years! I hope your's does adjustments.

The only painful adjustment she ever did to me was for my ribcage. She took me by surprise by pressing down, hard but I felt my ribs shift and once I got my breath back, I felt great. If my insurance hadn't been cancelled I'd still be seeing her.


05/16/2010 08:39 PM
stillhopeful
stillhopeful  
Posts: 5077
VIP Member
I'm an Advocate

I have both Lupus and Fibro and there are others here in the same situation as well as other chronic conditions. I was diagnosed with lupus years before I was diagnosed with fibro.

If you feel your symptoms are becoming worse, and most importantly different from fibro, I would definitely get a second opinion. It never hearts to get another doctors take on what is going on. And yes, you can have a neg ANA and still have lupus. If you ever feel strongly that you have it and nothing is showing up, have them check you for syphilis. Many people with lupus get a false negative for that, and they do not have syphilis, they have Lupus. I hope and pray that you don't have lupus, fibro is bad enough, but lupus CAN be worse, and do damage to your major organs. I have heart involvement and am being tested for kidney involvement for it right now. I pray those come back normal.

Good Luck to you and keep us posted on what is going on with your health.

By the way, I'm not sure we officially met. My name is Christine and I am glad you found us, but sorry that you need us.

Welcome Hugs~

Christine


05/17/2010 05:49 AM
Auntie3285
Auntie3285  
Posts: 9182
VIP Member
I'm an Advocate

Hello Emoney,

Welcome to our group ~~~

I agree with what Christine said about possibly getting a second opinion. It can never hurt even if you don t become a patient of the second opinion professional.

I understand liking your D.O. (because I really like the relationship I have with my PCP) but I am glad that he also referred me to a Rhuemy once my Fibro was dx d . I feel that because the two of them work rather closely with their patients that I am getting the best care possible right now.

Good luck and I hope your drs. soon find a reasonable solution to your problems for treatment.

Marilyn


05/17/2010 07:42 AM
pscrog
pscrog  
Posts: 386
Member

I am sorry. Whats a D.O?

05/17/2010 08:06 AM
mammy
mammy  
Posts: 7217
VIP Member

Doctor of Osteopathic Medicine (manipulation), there is another name but I can't remember right now. They are regular doctor's that go to school just like any other but they take extra training for this specialty. I don't know about everywhere but here where I live, they can be your PCP's or you can just go to them for manipulation. There are no restrictions as to what they can do as far as writing scripts or whatever. Hope that helps Smile

05/17/2010 12:47 PM
Emoney
Emoney  
Posts: 26
Member

Thank you all. I admit, I am scared to see another rheumy; the only one I've seen was truly a cruel doc. She told me that she treats OLD people that are in MUCH MORE PAIN THAN ME and then flat out accused me of drug-seeking. Makes one a little gun-shy to see another. It's hard too because I moved from the "big city" to the coast, I drive 2 hours to see my D.O. (pcp), and I don't know where to go.

I will see what she has to say and then let you all know. Thanks so much for the advice!!!!


05/17/2010 01:14 PM
Natalia5150
Natalia5150  
Posts: 3632
VIP Member

If your needs are being met and your DO Dr. of Osteopathy, listens and does everything you think needs to be done then stick with her.

For the record it takes longer to become a DO than a plain old MD.

Could you still develop the antibodies for lupus. Yes.

Should you continue looking into things, well apparently not with that one Rheumy. And if your DO makes noises about going back tell her the truth about why you do not like him!

I would never go back to a dr who accused me of drug seeking.

I am still on the same amount of Norco or T3 now 7 years( gosh 7, when I started here I thought it was only 4, but my honey says 7,) since I was diagnosed.

I have only had one flare I couldn't control myself and was taking way more than I should have been when a shot of Demeral probably would have put me out for 24 hours.

Never stay with a doctor who says things like that Rheumy did,. It is too bad that you didn't report her to the insurrance company you belong too as well as the medical board for your county. BUT NOW YOU KNOW , right?

It is totally reprehensible for any doctor speaking to a patient like that.

I am so sorry this happened to you. Not all Rheumys are like that!!!

Stay with your DO and if she does want to send you to someone, (she is being very good about making sure she covers all the bases!!!) have her make sure that he or she is honest and ethical. Unlike the one Rheumy you saw...no ethics!!@!

Two thumbs up to your rheumy! And for you sharing your story and talking to us.

Natty

Post edited by: Natalia5150, at: 05/17/2010 01:21 PM

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