Should I see another rheumatologist? Can anyone relate?

vette30vette30 Member New Member
So my Ana was a positive 1:640 tier finely speckled. Anemic, high sed rate, high crp, body aches like the flu, chest pain since 2016. Nose sores that last for a month at a time, feet and hands hurt everyday. Joint pain. Feel like the flu but negative for the flu. Rash on one side my face. Scabs I'm my head. Hives appear after exposure to sun. Body shuts down after being outside in the sun. Extreme fatigue. Rheumatologist says I'm perfect because my ssa and DNA were negative. My pcp says it's because of vitamin D deficiency. Should I see another rheumatologist? Can anyone else relate?

Answers

  • dawnzer76dawnzer76 Member New Member
    Getting a diagnosis can be so tough. Unfortunately, it takes most people years...  If you can see another rheumatologist, it might not hurt.  At least you would have a second opinion either way. 
  • JMJM Member New Member
    It takes years approximately 6 years to get diagnosed like dawnzer76 said. You should definitely consult with another rheumatologist but you should also write down all your symptoms, keep track of them for a few days or weeks. Remember you're the expert on your body, you know what you feel and it would be good for you too take that information to the rheumatologist.
  • SuzySuzy Member New Member
    If this Rheumatologist is doing nothing, I would change. With the list of symptoms there is something going on. I had to change, and found a GREAT Doctor! It took quite sometime to get to diagnosis, but we did find that it was best to do bloodwork during a flare up! Self care and reducing Stress are SUPER important!
  • torriejeantorriejean Member New Member
    Finding a good doctor is another bad piece to the whole lupus equation. I went through so many and have another new doctor I am seeing in a few weeks. Just keep searching and demanding ansers. Diagnosing shouldn’t be as hard as they, the doctors, make it; but it is! Advocate for yourself is the key and don’t stop until someone hears you. By the way a low vitamin D level is another sign that you are in a lupus flare. Best of luck! 💜🙏🏻💜
  • gammygammy Member New Member
    I have been diagnosed with lupus,  and my rheumatologist is worthless.  Is an endocrinologist better?
  • wwild1wwild1 Member New Member
    I would at least get a second opinion. My first rheumatologist ignored symptoms that I reported to him, like pain, swelling, fogged thoughts, etc. but I am not certain, as I look back, what should have been done differently. I do believe that taking too much ibuprofen for years for pain and swelling makes the colon weak. Be careful with “pain relief” meds no matter what they are. 
  • mylady13mylady13 Member New Member
    What do you mean by your SSA??? Did you mean your double strand DSDNA?
  • captpatsarcaptpatsar Member New Member
    Will I am new on this site but I just posted my concern about finding another Doctor. Which I am so use to see many different Doctors on Lupus.  Yes to your answer.
    I have seen lots.  You have to be your on Advocate.  Listen to your enter voice.  Only you know your body more than anyone.  
    Doctors know only what they want to know. Some are more specialized than others.  Remember you are your beat friend.  Keep Looking, 
    I am looking also. I had to travel 85 mile one way every three months and had a Great Doctor. It was worth it.  But now I live in a different State.  Haven’t found a good doctor yet but still looking. I’m Still Looking.
  • pdleonhughespdleonhughes Member New Member
    You definitely need to see another Rheumy...I continued to see one for 4 years with a diagnosis of Sjogrens Syndrome and Fibromyalgia.  I do have those, but I knew there was more to it.  As I researched, I found that my symptoms were that of a textbook case of Lupus...verbatim.  I told my Dr. that I was sure that I had Lupus...his reaction..."You do NOT WANT Lupus."  Uhhhh, no I don't WANT Lupus.  Needless to say, I changed Rheumatologist immediately.  Upon examination, he too didn't think I had it, but the tests that he did showed different.  I was in a major flare at the time, so that did help. As mentioned above, you definitely have to be your own advocate.  It's sad, because we don't feel like doing this type research, but it's necessary.  At least with the Sjogrens diagnosis, the first Dr. put me on Plaquinil, so that maybe slowed the disease down.  Don't give up because of one diagnosis, get the second opinion.  I truly believe I wouldn't be here now if I had settled.  Blessings to you all.

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