Path to Diagnosis Final

My appointment is scheduled for 1:00pm, but I had been so nervous and excited at the same time that I got there a half hour early. I was starving, but I know that when I have anxiety, food is not my friend, not to mention food hasn’t been my friend for a long time regardless of the anxiety. I head into the office and within a few minutes they are ready for me. The nurse takes me back to an exam room to take my temperature, blood pressure, the norm for any doctor’s appointment. My blood pressure which is normally somewhat low to begin with is super high – high enough that the nurse asks if I have blood pressure issues or am on any medication. I laugh and tell her no, I am just terrified today and along with my nerves and anxiety, I kind of figured my blood pressure was going to be out of whack. She laughed, told me to relax that everything was going to be fine and left to go get the doctor. About five minutes later a doctor I had never met comes in to speak with me. I find out that he is a medical student and that he is shadowing Dr. Salah. He wants to ask questions about my symptoms and if there has been any improvement or worsening along with any new symptoms that I may not have mentioned. We talk for about 15 minutes and I show him all of the pictures that I have taken over the past year – he makes a lot of notes and says that he and Dr. Salah will be back in 5-10 minutes. At this point, my heart is beating out of my chest and I am so nervous and anxious that the alien is back in my stomach again trying to claw its way out – thank God I didn’t eat! Both of the doctors return in a short period of time and now it is time for the news. Did I have a diagnosis? Was it as grim as I was anticipating? Was I going to have to keep searching for answers? Was I ever going to feel better? All of these thoughts were swirling in my head all at once.

Dr. Salah sat down next to me and said well… you certainly are a medical mystery and a quite interesting one at that. There is a quote that makes me laugh and reminds me of this exact moment. It says “I always wanted a man to look into my eyes and call me fascinating. I just wish it wasn’t my rheumatologist.” Dr. Salah proceeds to tell me that I have tested positive for a lot of different autoimmune diseases; however, some of the follow up tests that would give us a definitive answer were not positive. He said he had never seen anything like it before. So, he starts with my lupus test. I didn’t test positive on the first tier for lupus, but I definitely did on the second, so there was no question on that test. I was being diagnosed with lupus, which let’s be honest, I had assumed for about a month now. I also tested positive under the category other autoimmune disease antibodies by testing positive for Anti-Ro60IgG and I didn’t just test positive – it was like the lupus test. I was off the charts. This is usually associated with the diagnosis of Sjogren Syndrome, but other than the fatigue (which comes with all autoimmune) and a little dry eye, I did not have any of those symptoms and the dry eye is just because I wear contacts every single day. From what I had researched, those with actual Sjogren Syndrome are not able to wear contacts. Do you see where the doctor is going with the quite interesting LOL!! Continuing on with my results, he tells me that I have also tested positive for Rheumatoid Factor IgM. What??? I have no joint pain at all whatsoever. It is definitely the one symptom that I can honestly say that I have never had at all. This made me laugh, because other than a little pain in the ankle that I basically had replaced at age 20 and some tenderness in my hips (from doing splits and toe touches as a lifetime dancer), I literally have no pain. So, the medical student takes my hands and starts to feel each of my finger joints, wrist joints, etc. and while squeezing, asks if it hurts, which it does not. If I had joint pain at any time, I would have come a lot sooner to get tested as that is the main symptom of most of the people that I have come across with autoimmune disorders. We continue with my test results which includes testing negative for all thyroid problems which I was aware of because my general practitioner ran all of that earlier, but I tested positive for Anti-Carbamylated Protein (CarP) IgG. These protein factors along with the rheumatoid factor IgM usually present themselves years before the clinical diagnosis of rheumatoid arthritis, so while I do not have RA right now, he made sure to tell me that this doesn’t mean that I am not going to get RA and we definitely have to watch these tests. Finally, I tested positive for the Anti-C1q IgG which was just another Lupus confirmation. Because of the positive on the Sjogren’s as well as the positives on the RA – the doctor gave me a diagnosis of both Lupus and Mixed Connective Tissue Disease. Ok, so what does this mean I ask him. Basically, what is next for me…

Again, because I had done research, I had a few ideas on what treatment would be, but I had a lot of questions. The doctor starts by explaining my options, basically, he gives me the run-down of all the different medicines that I would have to take along with the horrific side effects of all of them. The way he is making it sound – these drugs that are supposed to make me feel better are actually going to make me feel worse, plus the long-term effects are ridiculous. One was heart failure; another was going blind. Are you kidding me? It is 2022 and we cannot come up with better medicine for autoimmune diseases. This was the part I was dreading, because I had already read the medical studies on some of these drugs and in addition to these effects, half the time, they didn’t work. One silver lining moment is that the doctor said that so far I am lucky as it looks like the system that my immune system has decided to wage war against was my digestive system where for most it is their nervous system or specific organs, like the liver or kidneys. The digestive system and the intestines are highly regenerative and will regenerate its epithelium lining every five to seven days and so it is able to heal itself when injured or damaged. This meant that even though my immune system is going haywire, hopefully at this point there is no long-term damage; however, he did mention that we will test other systems and organs every six months just to be on the safe side. I am totally ok with this, it might be a little expensive, but I am a proactive person, so I would much rather see a medical bill for some testing than one because I need a kidney or liver transplant.

After all of the discussion of medicine, the doctor says there is one more way we can go about this, since you have noticed that you have had great results with the diet the nutritionist has you on… seriously – www.lifeelevatednutrition.com , you could look into functional medicine. Because of my background and what I studied, I have always been a big proponent of using traditional and natural methods for healing yourself. I had tried it back when I was diagnosed with anxiety and while I did have some success, it just wasn’t enough and so I started on medication for the treatment. However, taking Prozac everyday wasn’t going to make me sicker like it seemed with these medications. I had read a few articles on the success that some autoimmune patients had with functional medicine and using diet, exercise, vitamins, minerals, and supplements for treatment. I asked the doctor to fully explain this treatment option, though I was pretty familiar with it already. At this point, I was concerned that I was making the doctor late for his next appointment because he had been with me for 30 minutes already. I asked him if he needed to go and if I should schedule another appointment. He told me he was exactly where he needed to be and that we were not done until I was completely comfortable with what we decided (have I told you how absolutely amazing Dr. Salah is?). He went through the diet changes that he would recommend along with the fact that there was a very long list of supplements because we would have to not just get the inflammation down in my body, but heal my gut as well. After giving me all of my options, he asked what I felt like doing and what decision I was making. I clearly asked him, “if this was you, what would you choose.” He said, “because you have had such great results with the nutrition, to be honest, I think you could really get some great results with the functional medicine path and then we always have the medicine as a backup if you still do not like your quality of life.” I said ok, let’s do this! And I meant it. I had troubles back when I was diagnosed with anxiety following a strict protocol, but at that time, anxiety and Prozac were not going to kill me. This time, there was that real possibility. I knew that I wasn’t dying today, but I had done enough research that if I did not get this under control, it could potentially be in my future. The doctor then handed me a book. This book was a life saver and I will recommend it to anyone and everyone that has any type of symptom that is similar in any nature. Even if you do not have an autoimmune disease, I truly feel that this book can potentially save people from many diseases, disorders, and symptoms in general. The book is called The Autoimmune Solution by Dr. Amy Myers. (This link will take you to the amazon store to buy it.) The entire premise of this book is to reverse the inflammatory symptoms. By reducing the inflammation, you are able to calm your immune system, thereby reversing the symptoms. One main thing you will learn from both my blog and podcast is that I will NOT recommend anything that I have not personally tried myself. The entire purpose behind what I am doing is to help those that A. have no idea where to start (been there), B. need personal stories, not just scientific data, C. do not have the time to sit down and actually comb through years of medical research and scientific data (one of my favorite things to do LOL) , and D. give a possible alternative to meds or a way to work in tandem with the meds that you take, because let’s be honest, you may not want to go on a strict diet or cut out anti-inflammatory foods, but I can tell you from experience that since I started the anti-inflammatory diet with my nutritionist on January 3 (before I even knew my results), I feel better than I have in years!

The doctor ended up spending a total of an hour with me. He calmed my fears, listened to me, gave me all of the information that he had and even gave me his personal opinion. While I know that medicines work (I am not here to tell you to go off of any medicine or that the diet and exercise will work for you, I am just wanting to help in a way where I really didn’t find what I needed in the moment), it was nice to hear a regular MD talk about what you can do naturally to help your body. I really appreciated everything he gave me that day, because for the first time in a long time, I actually feel normal most days.

Here are some weird pics of the entire journey!

The first gallery shows that I have had the lupus rash since my early 20s!