I need some advice. Iāve been very poorly for a number of years now .. it all started in 2020. After being gaslit by doctors and suffering with no treatment, I was eventually diagnosed with with a rare neuro disease, Transverse Myelitis (itās a bit like MS, but lesions are normally just in the spine). Anyway, after that I started to have issues with my breathing and chest pain. To cut a long story short, I also now have microvascular angina, and apparently I have long covid and maybe autonomic dysfunction.
The issue is that I also have issues where my heart, digestive system and vision play up. My liver function goes up and down and I seem to have constantly raised ESR and lymphocytes. Due to the above and extreme fatigue, lesions in my mouth, I asked for being tested for lupus. On 3 occasions now, Iāve tested weak positive for ANA and raised CRP but further test following ANA, such as ENA is negative. Am I to understand that in no way I have lupus or any other autoimmune condition?
Itās thought that my transverse myelitis occurred as an immune response. I also have inflammed bowels but not enough to be diagnosed with IBD. I also have hypothyroidism. One thing is certain, my body is in a constant state of inflammation and fighting. I can barely walk due to pain around my hips and low back and balance. I was super fit but now I can barely do anything. One thing else is that I do have āflare upsā and sometimes months can go by where I feel ok.
Previous rheumatologists have dismissed lupus or arthritisā¦ but I want to know am I being gaslit again or is my gut instinct about Lupus could still be right? How do I go about this? Please help!
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Nassy-K
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I caught covid in March 2020, so before the first lockdown. In about 2016, I first had symptoms of autonomic dysfunction and in 2019 joint issues and fevers. Basically after covid, my long covid changed into something very Lupus like.
My ANA was 1:320 speckled but ENA screen , anti-ds DNA and C2 and C3 negative.
My experience following local NHS referral was aweful.
I realised, from discussions here, that hydroxychloroquine might help my symptoms. After reading other peoples posts, as many have had a difficult journey, I contacted the London Lupus Centre and asked if any of the consultants might see me. I thought I should let them know my symptoms a bit up front, partly as doctors might have different specialisms and it might not be Lupus.
They gave me three names and said which London NHS hospital each was connected with, as sometimes people are referred back to NHS.
No health insurance and never paid for private care in my life.
It was fortunately a game changer.
I'm now diagnosed with Undifferentiated Autoimmune Connective Tissue Disorder (UCTD).
I have been taking hydroxychlooroquine for nearly three years. In addition, as still was flaring, I now take mepacrine. Miraculously I now am feeling like I used to 10 years ago before any symptoms. Twice I have needed steroids but now I not flaring. Whole array of symptoms gone.
There is hope. Not all doctors restrict case loads using the 2019 SLE EULAR/ACR Criteria intended for research only, but used by some to diagnose.
I learnt through a local group that there are others who have had systemic autoimmune progression following covid infection. At one stage, I related to transverse myelitis. I have had numerous eye hospital appointments for different issues, again nothing wrong prior to all this.
I used to be very well, did lots of sport and never was poorly really. Covid changed this. Hydroxychloroquine, and then mepacrine working in combo, seem for me to have reversed this, at least for now.
I am keeping my fingers crossed that I will, for my lifetime, find consultants who will help me who are not too far away, and be as excellent as the consultant I have currently.
My first rheumatology experience was not good, so I'll always be cautious.
Thank you so much for taking the time to reply and share links. I just honestly donāt know what to do. I always feel judged before I even say or do anything!
I was looking at the London Lupus Hospital and it looks very expensive .. but Iām also getting desperate for answers ā¦ if you think itās worth giving it a shot, Iāll go for it.
It is a hard decision and up to you to make..but you will know.
Email them maybe first and tell admin your situation.and see how they respond..
I said I wanted to try hydroxychloroquine to see if it stopped symptoms.
I followed this up with a phone call asking the questions you are asking now.
It is worth reading my hydroxychloroquine post above first - it also talks about a Lupus spectrum.. (Spectrum - I guess in practice a rather multi-directional thing, as autoimmunity covered is very complex and has different presentations and sub-groups.)
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Hi All
Now I am cross! Why don't doctors communicate with patients??!
Daughter is testing for SLE :'(
Forcing Diagnosis through deliberate Flares?
Frequent UTIs 
