Rheumatology Referral

A few months ago I was feeling extremely hopeful.  I was actually feeling like I could be “cured” or have a sense of resolution or even a treatment protocol that would provide me with some sort of relief.  Today, I am not feeling very confident and am actually feeling a bit defeated.

So, what’s happened in between then and now?  Well, a few months ago I was referred to an Immunologist because of a slew of symptoms that led my primary care doctor to think that I had something wrong with my immune system.  After seeing the Immunologist, he agreed with my primary doctor.  He thought I had a mast cell disorder.  I was scheduled for a “biopsy” of an area that was inflamed.  When I arrived for my biopsy I was told that they had to reschedule me because they “didn’t know how to enter the data into the computer system.”  Lovely!  Well, long story short, when I was rescheduled A MONTH LATER my itchy spot was GONE!  They do that.  They get red, inflamed and then they go dark and dormant.  So, when I was rescheduled I came in and they used a swab and sent my sample off to the lab for a gram test.  I had normal bacteria on my skin and nothing grew.  When I shared my results with my infectious disease doctor she said that they “did the wrong test.”  She said that the swab test is ideal for “wet” areas, but when it’s dormant or dry, the scrape test is what should be done.  So, I was a bit pissed to say the least.  My itchy spot was inflamed and wet when I went in the first time and it was not my fault they could not get a clean sample.  So, now I am back at square one. 

I actually hadn’t seen my infectious disease doctor for over a year due to Covid.  But, I brought her a bunch of documents to get her perspective from all the visits throughout the year.  I had labs from my Pulmonologist, Immunologist, Primary Care Doctor, Ophthalmologist, Urgent Care visits, etc.  One of my major concerns has been my eyes.  I started to have eye issues in the fall of 2016.  This is incidentally when I was diagnosed with Brucella and Lyme disease.  I remember when the issue started.  My husband at the time and I were on our way to a play and my eyes were bothering me really bad so I had him stop at a pharmacy and pick up some eye drops for me.  The eye drops didn’t seem to help.  My eyes hurt.  They were red, sore, light bothered them.  They felt like something were in them and they were very scratchy.  After a few weeks of dealing with this I got in to see a doctor and he diagnosed me with SLK.  It is usually associated with an autoimmune, thyroid condition.  I don’t have that.  I was treated for it and it was slowly resolving.  Well, it kept coming back with a vengeance.  Fast forward many years later and it is still bothering me, especially when I am outside my home with bright lights.  I was actually referred to a Neuro Ophthalmologist so they could administer Botox for my blepharospasm.  The Botox never happened because my doctor said that the dry eyes are causing the issues.  She actually did an exam and claimed I had zero tear production.  She said Botox wouldn’t help.  She actually prescribed me eye steroids and nighttime drops.  They did not fix the problem.  I actually felt my eyes get worse.  Then she told me that she couldn’t help me any further and then told me to try different over the counter nighttime drops and take some omega 3’s.  It was very frustrating because a couple of weeks prior she assured me that she would help me and try lots of different things to help me and then after seeing her this time she claimed that she could no longer help me.  I honestly wouldn’t want to see a doctor who isn’t that invested in helping me, especially after just 2 visits. 

When I spoke to my infectious disease doctor regarding my eye issues she immediately thought that it was related to Sjogrens/autoimmune disorder.  She is not the only one who thinks this.  I’ve been told this by EVERY SINGLE DOCTOR that I’ve seen over the past few years, BUT my ANA and every single auto immune disorder panel come back negative.  The only time I had anything remotely positive in the autoimmune category was when my ttg iga showed up positive for Celiac.  Further Celiac testing did not come up positive, but at least I had something to go on.  My infectious doctor thinks I have a blend of Sjogrens and Lupus.  She said that even though my lab tests come back negative, the Rheumatologist can clinically diagnose me.  She said that once I am diagnosed they can treat me with Hydroxychloroquine.  I am both excited, but nervous at the same time.  I am not a huge fan of clinical diagnoses.  I feel that if my labs don’t state I have it, then maybe it is something else?  So, I am torn on this. 

In other news, the Rheumatologist called to schedule an appointment and the next one is 6 months out.  But, my Infectious disease doctor actually is in the same office and she ran some preliminary tests that he would run after the first visit.  So, she is actually on it.  It will be interesting to see what comes from the test.  I truly hope that my test results accurately reflect what is going on. 

P.S.  Keep the faith and keep moving forward toward your accurate diagnosis.  Ask the questions, get a good doctor or team of doctors to appropriately advocate for you, and do some of your own research, and makes sure you bring in all of your documentation.