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lisabeans
@lisabeans

Posts: 85
Joined: Feb 13, 2017

Conflicting opinions from rhuemotologists

Posted by @lisabeans, Jul 24, 2017

I have been seeing a local rheumotologist for almost 3 years. I had a positive ana (1:160 homogeneous). All other blood work is negative. I responded very well to prednisone so he said I have an auto immune disease. I already have ulcerative colitis (which has been in remission for years). We have tried many different medications. I got the most relief from arava. Since it has been so long without a clear diagnosis, I went to Penn Medicine for a second opinion. I saw a nurse practicioner who was very thorough and spent a lot of time with me. She said that I don’t have any other positive blood work and not enough symptoms for an auto immune disease. I did have 14 out the 18 pressure points for fibromylagia. She told me to stop the arava and increased my amitriptyline to 50 mg. It has been over a week. I also did blood work for them and it call came back negative except for a low creatine serum. I am in so much pain since stopping the arava and completely exhausted. I feel like I am a guinea pig and am getting no where. I should be happy that I have a name for some of this suffering. My other symptoms are hair loss (no bald spots, just extreme thinning), swelling of hands and feet (only lasts a few hours and are fine by the morning), mouth sores that come and go, and sensitivity to sun and flourscent lights. I am starting to get really depressed as well. I have put on 20 pounds in 2 years, can’t work out from the pain. I am going to start aqua therapy. Sorry to vent but I know that you all can understand how I feel. My kids are getting tired of hearing mommy doesn’t feel well.

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REPLY

I know how frustrating it can be to not be able to get the diagnosis is correct. I’ve got a round circles with that myself, still am. I don’t understand is why did you leave your rheumatologist? If the medication he was giving you helped why did you leave and go to Penn State? And no offense I’d rather see a doctor at the nurse practitioner. I’ve had a lot of nurse practitioners think their doctors and when I finally talk to the doc I get a completely different way of handling things. Just my Opinion

I went for a second opinion. I was getting some relief from the arava but not total relief. My GI doctor said to get a second opinion since my rheumotologist didn’t want me on stronger medicines as to not upset my colitis. My GI felt that I should be on something stronger to suppress progression of the disease. The nurse practitioner at Penn did call the doctor in to go over everything. He said I don’t have enough evidence for an ai issues especially since my blood work is negative and my swelling is not lasting weeks at a time. He agreed with the fibro diagnosis but said since I do respond to prednisone even at a low dose, there could be an ai issue as well but he is not sure.

There are so many other possible diagnoses. Read up on Lyme Disease. My wife had it, was not diagnosed until she educated herself enough and then found a “Lyme Knowledgeable” doctor. I am not saying you have Lyme, I’m saying you need to be more of your own advocate. No one doctor can know everything and no specialty can know everything either. In 1950 there was plenty of doctors that knew a lot but there is sooooo much more information and permutations that it has become impossible to cover it all. That is why we have specialists nowadays.

Thanks @smiles2015. I was tested for Lyme disease 3 times and all have come back negative. Besides a positive ana (low positive per doctors) all other blood tests are negative. I am trying to advocate for myself but I really feel as if the doctors make up their mind about before hearing me. The second rheumotologist even said that since I don’t have bald spots my hair is not falling out. I get fist fulls of hair when I wash it, brush it or even run my hands through it. Since my dentist did not diagnose my dry mouth, she said I don’t have it. I have dry eye (per my eye doctor). She said that is not enough to diagnose auto immune. Plus some symptoms fit both fibro and auto immune like being sensitive to the sun, exhausted, I feel like I am in a losing battle.

@lisabeans

Thanks @smiles2015. I was tested for Lyme disease 3 times and all have come back negative. Besides a positive ana (low positive per doctors) all other blood tests are negative. I am trying to advocate for myself but I really feel as if the doctors make up their mind about before hearing me. The second rheumotologist even said that since I don’t have bald spots my hair is not falling out. I get fist fulls of hair when I wash it, brush it or even run my hands through it. Since my dentist did not diagnose my dry mouth, she said I don’t have it. I have dry eye (per my eye doctor). She said that is not enough to diagnose auto immune. Plus some symptoms fit both fibro and auto immune like being sensitive to the sun, exhausted, I feel like I am in a losing battle.

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Sounds like rushing and not listening doctors. There is more of that these days. On the Lyme issue (still not trying to prove you have it) – there are only about two labs in the country (mainland) who truly can test for the more subtle indicators of Lyme, most doctors send blood to just any old labs. The Western Blot test has several indictors and a certain amount of them is needed to make the diagnosis, but the special labs I make reference to use a more proprietary testing method and then the doctors also need to be a little less stringent in markers. The CDC gives certain specifics on their web site but add that they are only research suggested guidelines – not the be all/end all for diagnosis. Dry mouth and dry eyes raises potential for sjogren’s syndrome – but I’m not and MD. See if you can find a more user friendly doc. It is scary to have medical issues and not enough answers.

I did not realize thst there were special la s for Lyme. I know the world of auto immune is hard and it takes time to get a diagnosis. I will reseach doctors and see if I can find amother one. I just hate running in circles.

@lisabeans,

I totally agree with @smiles2016, You need to be your own advocate or have someone you really trust and knows you and your story to keep researching for causes of your symptoms. In my case my amazing wife helped me tremendously as my pain and memory issues would get in my way. I’m not sure I would still be here today if not for her.

Disclaimer: I am not a doctor, I am not saying you have lyme, but I am saying that all the exhaustive running down of possibilities finally pointed us to Lyme disease for me and so they were valuable and ruled things out.

I do have chronic lyme disease, but it took 2 years of seeing all kinds of specialists before one neurologist said “we need to start looking out of the box” and tested me for lyme. It came back negative – but a friend of mine who has lyme told me about the limited test recommendations by CDC protocols at the time.
So I found a local Lyme specialist thru http://www.ilads.org and they ran the test using http://www.igenex.com located in Palo Alto, CA.
based on symptoms I had already been diagnosed with Lyme, but being a scientist I needed facts. This test showed I did indeed have Lyme disease. I have since seen 4 Lyme Specialists and found they can be just as myopic as any other doctor. I was retested after the first 2 years of treatment and I still show an existing infection of Lyme.

I too know how frustrating it can be to find direction and a doctor who has and will take the time to keep up on the latest diseases or at least know how to research them. After 8 years I still do not have my symptoms under control, but researching and also searching boards like this can help you learn from other peoples experiences and hopefully lead you in a clearer direction.

God Bless,
Carl

Thanks Carl. I guess I have my work cut out for me. I see the rheumotologist Wednesday so I will see if she has anything more to say. My memory has been a problem too. I constantly forget to the tell the doctors of symptoms. I even write it down and forget to bring the list in. It is so frustrating!!! My husband supports me but can’t really advocate for me since he is in the same boat. He was in a head on collision 9 years ago and now might have fibro but he can’t get diagnosed. Seems odd to me that we have so far with technology and doctors still don’t have a clue. Or they are down right nasty. When I went for the second opinion, the PA was really nice. When the doctor came in, his first response was if you are getting some relief with your current doctor, why are you here? Turned me off big time.

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