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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 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?
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