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Seeking Help for Unknown Medical Issue
Autoimmune Diseases | Last Active: Jul 23, 2022 | Replies (41)Comment receiving replies
Hello Amy,
I feel for you as I have been through this no-man’s-land of diagnosis.
I know this is not about me but by outlining some of my experience may trigger in you or another reader something which may prove useful.
2006 - I had a dreadful cough for eight months eventually hospitalised and treated for Mycoplasma Pneumonia (a Molliute not a virus).
2007 - 3rd August became very ill with disparate symptoms mostly neurological (extreme fatigue, balance issues, nausea, fasciculations, lancinating pain, electric currents in feet, word confusion etc etc). Bed ridden for four months.
Numerous blood tests (including ANA’s), brain MRI, EMG and nerve conduction tests performed, all NAD.
Early 2008, Developed severe Gastroparesis (diagnosed with gastric scintigraphy) and gut dysmotility. Could tolerate a liquid diet only for four years.
Mid 2008 - cough returned. ANA’s repeated again all seronegative. Diagnosed with bilateral Bronchiectasis with an HRCT scan.
Over the next four years, fatigue gradually improved. One good day in fourteen then one good day in ten. Then eventually the numbers reversed to become one day every fourteen was a bad one, so that was a blessing.
Through these years I just knew there had to be an ‘overall’ diagnosis but everything was divided into seemingly mini-diagnoses. Fortunately I saw various specialists (neurologists, rheumatologists, endocrinologists, pulmonologists) and received treatment for each of these ‘mini-diagnoses’ such as Beta blockers for the POTS, Domperidone for the Gastroparesis, Lyrica for the Peripheral neuropathy, Pain meds for the extreme muscle and joint pain. This made life tolerable even though I just knew, because of the timelines, that they all had to be connected in some way.
2015 - by now it was eight years since developing all these ‘symptoms’. One day I went into my new GP doctor and asked her to repeat my ANA’s, anti dsDNA, anti Ro’s, La’s etc. etc. She questioned why and I laid out my current and past eight years of symptoms. The doctor agreed, then called me back a few days later needing to ‘talk to me’.
At last I had become SEROPOSITIVE for Sjögrens Syndrome.
At last I was believed and taken seriously, although I was ‘lucky’ in that some testing was positive along the way (as previously explained).
Interestingly dry eyes and dry mucous membranes/mouth are usually the preeminent symptoms associated with Sjögrens, however for me, neurological symptoms were my initial and by far the most life altering symptoms.
Post viral and post infectious syndromes such as ME/CFS can certainly occur after EBV and potentially any viral infection, such as Covid.
I’m reluctant to say though, best of luck being believed by the medical profession as the weeks, months and years go by without quantitative proof of aberrant pathology. This seems to be many people’s experience.
I hope something either shows up for you eventually in testing or better still, everything goes away!
Replies to "Hello Amy, I feel for you as I have been through this no-man’s-land of diagnosis. I..."
Amy,
I too went through a six month period of weird cognitive symptoms, dizziness, brain fog and dry eyes/ mouth.
The ANA was negative and I was told “ borderline Sjogrens” with no follow up.
Fast forward and I go for a CT for suspected kidney stones and they find ground glass opacities and fibrosis in my lungs!
I was finally diagnosed with AntiSynthetase Syndrome ( very rare) and Sjogrens!
I’m learning that the ANA is only positive with a flare I believe so that explains the difficulty in diagnosing these autoimmune diseases.
I go to a clinic at UF Health / Shands which is a teaching hospital ( the best for diagnosing and testing is a teaching hospital).
It’s so good to finally know what is wrong, you feel like a hypochondriac when no one can pin point the problem.
I’ now trying to wean off Prednisone and also Myfortis.
I went through the whole isolation thing in the midst of the pandemic and I’m amazed we all survived the isolation.
Accupuncture, PT, yoga and progressive relaxation as well as massage have gotten me up and moving again!
My family is also clueless about the whole deal but my Son has been my biggest support, thank God for him!
God bless and keep moving, I go to the gym daily even if I’m in pain in the morning!
Keeping it light and lovely here in Florida!
Thanks to Mayo for this support group too!🥰
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It took a lot for you to write out your medical history and I for one appreciate that you did so in order to try to help others.
To Amy I want to say I’m sorry for all that you have and are going through. It’s just awful what we have to go through while trying to get diagnosed and treated. I don’t want here to speak about my experience with Sjogrens, RA or Lupus but to shine some light on your covid experience by sharing a little of what happened in October of 2020 with my daughter. Many many people are surviving that horrible disease physically but mentally and emotionally not so much it’s taking a terrible tole on them and we try to move on and don’t realize what it is still doing to us. My daughter got covid the second time that October and was very ill in and out of ER for a week. Finally on a Friday night her husband had to drop her off (remember family could not stay with them) and she was put in a medically induced coma on a ventilator for 23 days. She remembers everything that went on. She was stuck in that state of being she thought for the rest of her life. Hearing everything that was being said around her. All of the people that came in and out around her died but her. We know this for sure not time here to tell how. We are a family that believes in therapy she got in therapy immediately and is still working to some extent on the now PTSD diagnoses. I only wanted to share this because I totally believe that covid has literally devastated us in more ways and it is far reaching. My daughter is a blessed one because she isn’t holding in all the pain grief anger sadness and on and on. If it doesn’t come out in a healthy way it will come out in an unhealthy way and we deserve better. Don’t we. All of us have been through enough trauma trying to deal daily and to get diagnosed. Please forgive the length. Diane.