I totally get that life isn't easy, not even a little bit. I'm okay with that. I actually like some rough edges and challenges in my life. But, this week has a put me into a full blown tail spin. Since my "official" diagnosis, I have gone through my ups and downs with acceptance, but I felt like lately I've been in a pretty good place mentally. I've accepted it (for the most part), and I have just been focusing on improving my health and advocating for others. Then, Monday happened....
My local rheumatologist is wonderful. I feel like he listens to what I say, and he is pretty damn good at his job. But, he has been doing his job for 30+ years. I would say he knows his job, but I asked myself, how long is he going to continue doing his job? Since he is not part of a group practice, I decided I would look for a group of doctors that could provide me continuing care. If I'm going to deal with a life-long disease, then I really want to make sure I am part of the same group, so I know they have all of my records, watched me over the years, etc.
This past Monday, I went up a well-known Chicago hospital with the purpose of talking about the disease and developing a plan of care. What I got was not what I expected. The doctor came in to discuss my symptoms and some previous tests that I had done, and her next eight words broke me ... "I am not convinced that this is Sjogren's".
Are... You... Serious? Cue the streaming of tears. Does this put me back at square one? Now, don't get me wrong, I am not doubting her education as a doctor. I am not one, nor do I plan on being one in the near future :) But, after all I've been through leading up to my diagnosis, this surely put me into a full-blown tailspin. Sjogren's Syndrome has some cardinal symptoms of dry eye and dry mouth, but as I've researched and talked to my diagnosing rheumatologist, it is not required nor does everyone have those symptoms. The Chicago rheumatologist told me that she isn't saying that I don't have Sjogren's, but she just is not convinced.... she wants more objective proof - that being dry eye or mouth. I told her that I'm always thirsty (isn't that dry?), and my eyes get scratchy (isn't that dry, also?), but that is not enough for her. It honestly feels like if I am not using artificial tears or can't chew dry foods, this cannot possibly be Sjogren's. And as I said, I am not discrediting her as a doctor.... maybe she is right.... But, how can so much research, other people with Sjogren's and their symptoms, and my diagnosing rheumatologist be wrong? It is frustrating to say the least.
I am in the process of trying to get a referral so that I can go to the Mayo Clinic and get a group of doctors' opinions. I have also turned in all of my paperwork to a holistic/certified nutritionist to get her take on everything and to hopefully help me get to the root of my symptoms, not just treat the symptoms. I've been on may Sjogren's boards nonstop, talking with others with this disease. I know we aren't the doctors here, but we are the ones that are dealing with this disease. So many of these Sjogren's survivors have commented on my posts.... I would say 30+ so far have said that they DO NOT have the dry eyes and dry mouth, but they still have Sjogren's. Many also said that they do have dry eyes and/or mouth, but they did not develop these symptoms until YEARS later. What is common throughout the board is that everyone was diagnosed in different ways... blood tests only, biopsy only, symptoms only, or a combination of some or all of these. Yes, many were diagnosed purely on symptoms only! So, for this new rheumatologist to basically toss my test results... it totally boggles my mind. Again, maybe she is right! Maybe she is onto something! But, then that says my current rheumatologist is wrong when his gut feeling was that this was Sjogren's disease..... and that my lip biopsy coming back positive isn't indicative of anything... What I have figured out by reading the boards is this... Every rheumatologist interprets data/results/symptoms differently. They make their own assumptions and diagnoses, and they may not always agree with each other. This is why you must go with the doctor that you feel is in your corner the most.. the doctor that has treated you with respect and as an equal in the fight for your own health.... the doctor that you feel is helping you the most.... You need to do your own research... find others like you! Discuss, share, fight!
I recently started the medication that my current rheumatologist prescribed for me. I'm not a huge fan of prescription medications because there are always so many side effects. But, I'm not feeling completely better with just supplements, and I want to slow the progression of this disease. I think it may be helpful for those going through an auto-immune disease or similar situation to know my symptoms, what tests were positive and what medications/supplements I am taking....
Symptoms -
The following are symptoms that stay fairly constant:
Brain Fog
Tingling chin, lower lip, tongue and throat
Severe fatigue
Muscle aches (flu-like)
Lack of taste / metallic / always thirsty
Itchy eyes
Tingling / burning in extremities
The following symptoms come and go:
Scratchy throat / globus / constant clearing of throat
Reoccurring sinusitis
Hot/sweaty at night
Bruising without injury
Test Results Used to Diagnose (not all-inclusive) -
Anti-dble Stand DNA - Positive 13.0 IU/mL
ANA - Positive with Speckled Pattern
Lip Biopsy - Focus Score is 1 - Focus score of < or = 1 can be seen in Sjogren's disease
Medications/Supplements Taking -
Plaquenil 200 mg, 2x day
L-lysine 1000 mg, 1x day
Zinc 50 mg, 1x day
Iron 65 mg, 1x day
Pre-/Probiotic
Multivitamin
Oasis Health AnP Joint Muscles / Inflammation https://oasis.care/products/
Oasis Health AnE Fatigue
A lot of my positive blood tests have been a low positive, but I have read that many people have been diagnosed without even having positive blood tests. My rheumatologist took my symptoms, blood tests and lip biopsy to diagnosis me. Also, my rheumatologist said (along with other research I have read) that if a lip biopsy comes back positive, that is pretty much the gold standard for diagnosing Sjogren's Syndrome.
Hopefully these blog entries are proving helpful for others, and they may also provide more questions than answers. But, that is what is important... questions and answers... dialogue. There is so much that is still being studied and needs to be learned about auto-immune diseases. And, it seems like my journey for those answers is going to continue for quite some time. I will keep everyone updated on any new answers or tests, and I will for sure be updating you after I talk with the holistic nutritionist. I'm hoping she can dive into the "why's" of auto-immune diseases. The more I've been reading, the more I am starting to understand how much food and the environment truly affect our bodies. Some research even suggests that food and/or environmental factors can be the trigger an auto-immune disease needs to activate. Certain people are more prone to developing an auto-immune disease than others, but it needs a trigger to activate. I want to see if I can dig and figure out some of those triggers, and hopefully, put this disease into remission.
Until next time, have an amazing day, and continue being your own health advocate!
-Stefanie-
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