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(I need to get the blood results so I can post, but here is our conversation. Of course this is my version of it)
We went back to the doc, and it was a carbon copy of the last meeting. He said you have Fibromyalgia. We can not fix this, and we have 2 drugs that have been approved for it that we can try and see if they help you.
Ok, can we talk about the Blood work?
ANA was positive, dual patterned, Speckled and homogeneous with a 1:320 ration this time (last time was 1:640). he said this means nothing, 25% of the population will test positive for this and have no explanation for the results.
Anti-DNA DS was positive with a rating of 13 (up from 11 last time). He said this test is wrong, the lab did not get it right.
He then went on to say that the other tests (never said what they were, but we have a copy at home) were negitive for anything, so you MUST have Fibro and nothing else fits.
I then asked about the symptoms other than the Pain and Fog, for instance the Nausea, weakness in her leg, tingling in her arms, severe headaches, he said that he does not know what is causing those. BUT we can try the drugs and see what they do.
I asked, will the drugs help the fog or nausea. He snipped back, I said we can not fix this. then gave me a cocky response about how he can not predict what her results may or may not be. WELL DOC, what do the clinical studies and your experience suggest we should expect by taking these drugs. PAIN in the limbs is the easiest symptom to deal with, will it help the symptoms that are life changing? He replied, no, I don;t think so. THEN WHY TAKE THE DRUG? It seems you are not sure what is happening. No I know she has Fibro... OK, what relief can we expect .. she has to try the drugs to see. Will they make her more TIRED than she already is, because that is not acceptable. Most likely. OK, then I ask again, to what benefit can we expect, and what exactly is going on to cause all the symptoms that you are not explaining with a fibro Dx? I do not know....
OK< we are going to get another opinion, please give us a copy of the blood work. there will be no drugs until we have an understanding of what the drug is expected to improve, and what is causing the remaining problems.
We went back to the doc, and it was a carbon copy of the last meeting. He said you have Fibromyalgia. We can not fix this, and we have 2 drugs that have been approved for it that we can try and see if they help you.
Ok, can we talk about the Blood work?
ANA was positive, dual patterned, Speckled and homogeneous with a 1:320 ration this time (last time was 1:640). he said this means nothing, 25% of the population will test positive for this and have no explanation for the results.
Anti-DNA DS was positive with a rating of 13 (up from 11 last time). He said this test is wrong, the lab did not get it right.
He then went on to say that the other tests (never said what they were, but we have a copy at home) were negitive for anything, so you MUST have Fibro and nothing else fits.
I then asked about the symptoms other than the Pain and Fog, for instance the Nausea, weakness in her leg, tingling in her arms, severe headaches, he said that he does not know what is causing those. BUT we can try the drugs and see what they do.
I asked, will the drugs help the fog or nausea. He snipped back, I said we can not fix this. then gave me a cocky response about how he can not predict what her results may or may not be. WELL DOC, what do the clinical studies and your experience suggest we should expect by taking these drugs. PAIN in the limbs is the easiest symptom to deal with, will it help the symptoms that are life changing? He replied, no, I don;t think so. THEN WHY TAKE THE DRUG? It seems you are not sure what is happening. No I know she has Fibro... OK, what relief can we expect .. she has to try the drugs to see. Will they make her more TIRED than she already is, because that is not acceptable. Most likely. OK, then I ask again, to what benefit can we expect, and what exactly is going on to cause all the symptoms that you are not explaining with a fibro Dx? I do not know....
OK< we are going to get another opinion, please give us a copy of the blood work. there will be no drugs until we have an understanding of what the drug is expected to improve, and what is causing the remaining problems.
I just can't believe how some of the doctors act and talk to the patients.. With the amount of money they make you would think they would have better manners or care more.
Good luck with the new Doctor.
Melinda
I remember your first post, and was waiting to see how you and your wife are doing. This is so frustrating!! I can understand what you are going through. This doctor calls himself a doctor?? What a joke.
I am so sorry you and your wife are going through this. You will get many stories from many of us here that have experienced similar situations. I was dx. with fibromyalgia in 02 and my rheumy now says this was most likely a wrong dx. In 09 my symptoms got worse until I ended up in the hospital. Since then I have been dx. with Connective Tissue Disease and Mild Lupus. But I have to tell you, my symptoms are nothing like mild! My life has changed,and this illness has really taken a toll on me. I have had brain and heart inflammation, and now dealing with really bad stomach inflammation. I am disabled, I can not work, and struggle to make it through the day, some days worse than others. My kids are the only reason I move sometimes.
You are doing the right thing by getting a second opinion. I went years of not knowing and I possibly could have prevented some damage. This is a life changing experience. Keep searching for someone who will listen.
Bryan, How about her vitamin levels? Did they check her calcium and B levels? Is she Vitamin D deficient? This could also be causing a lot of your wife's pain. I would ask for this when you get blood work done again. Many of us have vitamin deficiencies, it is common with us. Did you say she also has gotten a rash? This could be your main indication that it could be lupus related. Have you thought about seeing a dermatologist? If she has a rash, they could test her.
Well, all I could do is offer you support like many of the wonderful ladies I have met here and have helped me immensely. I wish you the best of luck, in getting some much needed answers for your lovely wife. I think it is great that you are right by her side helping her. Believe me, it is not easy. Please keep us posted.
Good luck.
Sorry for the vent... you will get a lot of that from me right now, I am FIRED UP. I can not stand knowing my baby is hurting and the Doc we turned to gave me what I perceive to be no effort.
Anyway, you brought up Vitamins, and that was on my list, and he never let me get into it. Next doc will get that up front, thanks for bringing it up again. You also triggered a memory and frustration of mine. Several years ago (2 or 3) Tracy went to the doc not feeling well and they tested her and said she was deficient in B-12 (could have been B-6, it was a long time ago) But they said that her body was not metabolizing B-12 from her diet like it should and that she needed injections. We started (again long time ago) giving her daily, then every 3 days, then once a week, then once a month...then they said stop on the injections. There was no retest to verify that her levels we being maintained, just you can stop now. Being a good little soldier we did as we were told. However, I have always been concerned and curious about this treatment. First, what would cause her to go deficient, even when she was taking daily vitamins. The doc said her body was not adsorbing them, right... but what changed to cause her to not adsorb them? I never got that answer, it still haunts me. Not only what caused it to stop, but how did the injections magically reverse it?
Long story, but yea, she has had a vitamin issue in the past, and I have no idea if it continues, or if it is a single vitamin or is the problem bigger? So I need to really ask for that blood work to be done. THANK YOU, again!
As for the doctor saying that 25% of the healthy population would test positive to an ana level of 1:640 and 1:320, again i think he needs to do his homework a bit more. Some studies have shown that only 3% of healthy individuals would test positive to ana's of this level. And i would assume that those in the studies would be deemed healthy as they have no symptoms.
The fact is your wife has symptoms, she is not feeling healthy, and she has lab results that support the fact that she feels unwell.
Did he diagnose fibro after assessing the tender points? There is always a possibility she could have both.
I to would be uneasy about taking fibro drugs due to their side effects without having a better explanation as to why your wife has a positive anti dsdna and ana level. Not to mention her issues with fatigue, nausea, headaches etc.
Good on you for standing up for your wife and getting a second opinion. Hopefully the next Rheumy is more understanding.
I would suggest not meeting with a nurse practicioner for your 2nd opinion if possible and see the doctor first. I have dealt with some great nurse practitioners that I prefered over certain doctors but I am pretty sure they cannot give a diagnosis and as a new patient trying to determine what illnesses she is suffering from, I would suggest only meeting with doctors who can give her a diagnosis and whose diagnosis and/or theories on on her case will diictate her treatment plan going forward. Whenever I have any significant changes in my health, I cancel my appointment with the nurse practicioner at my rheummy (I usually see him every other appointment) because it is a waste of time/money to see her since she will not significantly alter my treatment plan without me meeting with the doctor. I
What a wonderful husband to be so involved with your wife's care. That is very unusual & I am sure it has helped her so much in the process to have you as her rock to lean on, supporting her. Good luck.
Anyway, we are playing the game as well as I know how. trying to see multiple Docs without breaking the bank, and trying to get to one that we know is receptive to at least considering something other than Fibro and ignoring everything else. Not to say Tracy does not have Fibro, but to ignore and dismiss everything else pisses me off! :)
Thanks for all the great info and support. It does help me more than you will ever know.