View Full Version : Newbie Maybe

02-21-2013, 08:18 PM
I am so confused. I've had a skin biospy that came back negative for lupus. I've have blood work and my ANA results came back boarderline, my rhuemy doctor seems to think that its a medical induced. I'm so frustruated.

Let me back track a little, a couple of years ago I lost like the 2inches of my hair from the front hairline, it was sore white, scaly and red patches. Hence the skin biopsy. Well I still get these patches on the side of my face, behind my ears and in my hair, sometimes I can't even comb my hair cause it hurts so bad.

I was also told that I suffer from fibromyalgia and have arthritis in my lower back. With that being said, my joints lock up so bad that there are times when I can't even get out of a simple chair, my joints hurt so bad that I'm in tears some day and I'm severly fatigued. The rheumy doctor prescribed cymbalta and vicadin for the pain. I'm not a pill person so its hard for me to take any of the meds. When I'm in the sun I break out with all these black spots on my arm. I have a cousin that has lupus and we were discussing my sypmtoms. She was like it sounds like you have Lupus. I started reading up on it and it does sound like it. I spoke to my primary doctor and she said the same thing....she also said that it could take time to diagnois. I'm just at my wits end.....I'm sorry that I keep babling but I'm just so tired of hurting all the time, when it rains, when it cold out side my joints lock up so bad that I can barely walk.

Any suggestions please help.

I'm also in the process of looking for a new rheumy dr.

02-22-2013, 07:28 AM
The ANA can be positive in many illnesses other than SLE.There is a certain percentage of the population that will test positive for it at a lower titer and never go on to develop an AutoImmune illness in their lifetime.It becomes more likely to receive a false positive as you age and if you are female.If you don't mind answering some questions perhaps I can help you further.

The biopsy that was done was negative for SLE you stated,but was it positive for any other conditions?Who did it?And what were their recommendations?

What medication were you taking your Rheumy felt could cause you to be ANA borderline-if it was MIL it would subside after cessation of medication but could take a while for your body to process out the medication and kind of "get back on track" so to speak.

If you are still having the breakouts are you visiting the Rheumy when it is active so he can see them?

I understand the longing to return to "normal" and get rid of the symptoms.Often this does include taking medications prescribed to help alleviate and reduce the symptoms you present with.Both medications that you stated your Dr wrote for will help with the muscle pain,fatigue and the joint issue.The Fibro itself can cause all of those issues alone(except for the sores)

Are you seeking a new Dr because you have issues with this one?To me he sounds like he is being proactive.He is listening,prescribing meds to help with your complaints and trying to figure things out.He is not out and out dismissing you or releasing you from care.To jump to another Dr if this one is trying to help is going to start the process over every time.Most if not all are going to recommend some type of medication.It is up to YOU whether you take them or not.If you DO NOT and just change Drs then you are not going to get any relief and find out what works and what does not.

Filling my first prescription was one of the hardest things I had ever done.I don't even like Tylenol.I was desperate enough for help and took a deep breath and walked into the pharmacy.

That was almost 6 yrs ago.They now recognize me by sight and often over the phone.That is the reality of this illness.At some point you are going to have to trust someone with your health.It is a very hard decision.It is in your hands but to me to change a Dr that is listening,working with you and offering help and trying to investigate(and it can take years as labs do change-I have had the very worst labs when physically I have felt fine and thought I was doing great and had really good ones when I feel like I need to drag myself to the bathroom with my tongue :))

Sorry this is so long but I had questions :) and wanted to offer my perspective on how your Dr sounds to me.This is not going to be a fast process,for many it takes years and dont ever lose sight of the fact that he is trying to help and you may not get as lucky next time.And then you will go from dr to dr to dr looking.It will be harder and harder to find answers.That's why I say stay with one that is working with you.Unless it's a huge personality conflict,etc cause you never know what the new one will be like.I have never changed.I love my dr.I told him if he dies I will do black magic to bring him back!LOL!And if he retires I will come feed him every day just so he will be there if I need him.Kind of like his own Meals on Wheels.

Welcome to the Board and if you don't care to share more of your story I will also try to provide answers as I am also a biopsy veteran.

Be well!