• over 1 year ago

    Lupus? RA? Sjogren’s? Do I need a second opinion?

    I just met with my Rheumy and he offered no diagnosis and no path forward and I am both shocked and frustrated.

    For the past 3 years I have been dealing with joint pains (fingers, hands, wrists, hips, knees, ankles, and elbows). Every morning I wake up feeling like I was hit by a bus. After about an hour or so, I am able to move around and my joints feel bruised. It is symmetrical. For example, both left and right pointer fingers hurt worse than all other fingers throughout the day. I have clear cognitive dysfunction. I forget what I am talking about mid sentence. I will forget what others tell me. I sometimes find myself in a stall mode where I am just staring at my computer screen at work. Its like my brain is refusing to work for me. I use and sometimes type the wrong words. So instead of saying “I drove the car” I would say/type “I used the bike”. These mix ups are so confusing, people around me think I am losing my ever loving mind. Concentration is becoming a huge issue as well. My overall body is achy and feels like a dull pain is covering my entire body. Fatigue is a huge issue as well. I describe it as a powering down of my systems. One minute I will be fine and then I will go through 5 days or so of intense fatigue. I also have sharp stabbing pains going through my left arm and hand throughout the day. It’s so painful that it keeps me up at night and will affect my concentration. My hands go numb when holding my phone or talking on the phone and at night when I sleep. About two years ago I started getting these debilitating back pains. I kept ignoring them until I finally went to the ER and found that I needed an emergency gallbladder removal. I thought everything would be better after that, but the back pains still persist. These pains have the intensity of a contraction. It sounds similar to pancreatitis pains, my my blood tests don’t show any issues with my liver or pancreas. I also have a red rash that showed a little over a year ago. I have just gotten pregnant and assumed it was related to hormones/acne . It is still here and looks similar to a Malar Rash. When the color is more defined I know I am about to get extreme fatigued followed by the back pain and intensification of the above mentioned symptoms. I also get mouth ulcers about 2-3 times a month.

    As for blood work, I have a positive ANA with a titer of 1:1280. I have speckled pattern. I have a positive Anti-SSA (149 strong positive). I have a positive RH Factor (54). I also have an equivocal saccharomyces cerevisiar AB (IGA) at 21.2.

    During the appointment I had Friday, my Rheumy looked at my hands and said the fingers didn’t bend correctly. He asked if I could open jars and I let him know opening jars, taking my charger out of my phone in the morning is impossible and opening water bottles is impossible in the mornings as well. He proceeded to tell me he thinks I have osteoarthritis even though I am 40 and young for that diagnosis. He asked if my mother had issues opening jars and when I confirmed she did, he said it’s genetics and not Rheumatoid Arthritis. I later saw a table with the differences between the two and found that my symptoms more fit with RA. It is symmetrical pain, it came on suddenly, I have a high ANA and a positive RH factor, etc. He then pushed a couple muscles and when I flinched he said my muscle pain is from not getting enough sleep and possible fibromyalgia, but that he couldn’t help me with that. He then went over all my blood work and said the only thing he sees is that I might be at risk for Sjogren’s. I did ask about SLE, he said if I had SLE then I would have 4 out of the criteria list he gave me. He said the Malar Rash (picture posted) has to be diagnosed by a dermatologist. I don’t have arthritis (which I thought he just said I did and I clearly have all symptoms pointing to it). He agreed with mouth ulcers and positive high titer ANA so I only had two.

    He ended the appointment saying there was nothing he could do for me. I don’t have dry mouth or dry eyes so he can’t make a Sjogren’s diagnosis. He told me to go get a second opinion. I have been shocked since Friday. I clearly have something going on so I am baffled why he is done searching for answers. My first appointment I was five minutes late and he seemed annoyed by me. I overheard him dictating my patient record and he said that he didn’t think I had any issues and that the blood work would most likely reveal nothing. I called him after that appointment and asked him why he felt that my blood work we just sent in wouldn’t show anything. He explained to me that he has been doing this for years and he just knew. He was apparently wrong.

    Am I going crazy here, or is this doctor blowing me off? I feel like all my symptoms point to some sort of autoimmune issue. It took 3 months to get into this doctor and get all the blood work results back. I feel like I wasted 3 months and still have no answers. Any advice on where I should go next?

Responses

  • over 1 year ago
  • over 1 year ago

    RE: Lupus? RA? Sjogren’s? Do I need a second opinion?

    You should definitely get a second opinion. I've had a similar experience. Remember, Doctors, for all their fancy titles, are humans too. Despite training that's supposed to prevent it, They wind up taking their personal problems into the office or can be just plain incompetent. An ANA of that high means their is SOMETHING auto-immune going on. You should politely ask his office staff for a copy of your lab results (you'll get nowhere by antagonizing them) and get a an appointment elsewhere as soon as you can. With those results, you might even try asking you primary doctor (if you have one) to refer you to someone he/she thinks is good-maybe your primary doc could ask that you be seen more quickly
  • 11 months ago

    RE: Lupus? RA? Sjogren’s? Do I need a second opinion?

    I'm sorry you are having a hard time. I don't agree with anything the rheumy said to you except that you should get a second opinion. Your ANA is high, mouth ulcers, one hour morning stiffness, brain fog and possibly a malar rash. I am not a doctor but I believe you probably have SLE lupus, largely supported by the high ANA. It's not uncommon to have crossover symptoms to other auto-immune diseases, like RA. My advice to you would be to take pictures of anything abnormal including red and swollen joints, face rashes, and any mouth sores. Check the back of your mouth, your tongue, and the roof of your mouth for sores that you don't feel. Also, return to your primary MD with your labs and pics, see if he/she is willing to render an opinion. Lupus is treated both by rheumatologists and some primary MDs. If your primary will at least acknowledge an auto-immune process, see what he/she can do for you. Can they start you on Plaquenil while you are pregnant? Suggest other labs? C3, C4, dsDNA, ESR? If you start Plaquenil, it takes several months to be effective. You and your primary may feel treatment can be handled with him/her. Otherwise, hopefully your primary can treat you temporarily until you can get a second opinion by a rheumatologist. Research rheumy profiles on the clinic website, Google them, check patient reviews, ask around if anyone else sees a rheumatologist and their opinions, use social media for opinions on rheumys if you're into social media. Hopefully you can avoid another experience like the last one. Other things you can do for yourself is to research anti-inflammatory diets to find foods to incorporate in your diet and foods which are making your symptoms worse. Google sleep hygiene and aim for 8 hours of sleep. Get some purposeful exercise every day even a 20 minute walk. Try daily meditation. See if your primary will refer you to physical therapy, especially for your hands. You may want to look into chiropractic, holistic medicine, acupuncture as this may be a long road for you with modern medicine. If you feel depressed, and why wouldn't you after 3 years of this, find a good therapist, research one first. Research Prednisone and be prepared to make a decision if you will ever accept steroid treatment. If you are diagnosed, this may be offered when you are in an acute flare and you should be well educated beforehand, not when you are writhing in pain. And lastly, if you see a doctor or therapist you don't like, research and find a different one. I hope some of my advice is helpful to you. I hope you get some answers soon, and some relief.
  • 10 months ago

    RE: Lupus? RA? Sjogren’s? Do I need a second opinion?

    I know how you are feeling. I don't have answers. I do recommend seeing a different doctor. There has to be answers and you should get them even if you have to get a second or third opinion. I'm in the process of this myself. Not a fun process. You shouldn't have to live life in pain. (hugs)