Hi all and I hope you are all having good days today.
I’m new here but have been reading your posts with much interest and I’m so sorry at the time some of you have waited for a diagnosis and some of the scary things you have had to go through.
It is somehow comforting though to hear that others share your strange and scary symptoms and Twitchytoes, do not feel so alone with your version of Sjogrens. I am with you symptom by symptom.
My story starts about 9 years ago with dizzy spells, palpitations and terrible reflux. I thought nothing of it till I started having the most odd sensations, numb spots, blurred vision and little facial rashes.
It was put down to peri menopause for a while but eventually I was referred to a Rheumatologist as I had joint pain, dryness and a slightly elevated RF. By the time my appointment came round though my RF was through the roof and I had salivary gland stones.
After seeing a useless Rheumy at my local hospital, I was sent for a second opinion to the lovely Dr D’Cruz at the lupus unit who immediately diagnosed me with Sjogrens. High RF, low complement and borderline/negative ANA. He said it was fairly mild and started me on Hydroxy.
Things settled down a little and for the next year or two, things were up and down but bearable. New symptoms would come and go, some of them quite odd and some very scary, but they would all go and it would all be put down to the Sjogrens. That was until I was one day told it was not the Sjogrens and I was un diagnosed. No one had any idea what was wrong with me so naturally panic set in.
I was told I should see a Neurologist immediately. The Neurologist said there was nothing wrong neurologically and I should find another Rheumatologist and this is how things went for many years. In all, I saw 5 Neurologists and was tested for MS, CNS vasculitis, Temporal arteritis, POTS and a host of other things. All negative and normal. I was also told by several doctors that it was all in my head and was referred to therapists. This was now stuck on my records so every doctor I saw instantly saw this and didn’t take me seriously. I was labelled “stressed” for such a long time and always asked “When did you last see the Pyschiatrist?”. It was all made so much worse by the fact that I was now seeing a Urologist, a Gastro doc, Opthalmologist, ENT and Max fax and I admit I was scared. In all fairness I probably did look like a hypochondriac or an overly stressed worrier. One doctor said I was anxious as I was hyperventilating. I probably was but it was because I couldn’t breath properly as my chest hurt.
Over the years I’d had scans on every part of my body, Cardiac investigations, bladder scans, lumbar punctures, liver scans, VEP’s, NCS etc yet nothing showed up anywhere. Even my lip biopsy was inconclusive.
Eventually I found a Neurologist who took me seriously and instantly said it was Sjogrens. He’s an MS specialist and said he sees this type of Sjogrens all the time. He also complained that most Rheumatologists work within such a small window and if something doesn’t quite fit in it then they disregard it. He explained that the reason nothing was showing positive was that my peripheral nerves were not yet damaged, they were just aggravated by something. It could be either an immune response or a chemical reaction to the antibodies. Further more, aggrevated (or even sometimes inflamed) nerves don’t raise ESR or show up on NCS and the symptoms come and go. Scary thing is though that the longer they remain aggravated, the more chance there is of them becoming permanently damaged.
About two years ago I was taken to A+E when I woke up unable to swallow with a mouthful of stomach acid and trouble breathing. The A+E doc said it was typical Sjogrens and that I should find myself a decent Rheumy. I did and while waiting for my appointment I started to have trouble swallowing, ear pain and tinnitus, balance issues, wobbly legs, couldn’t see straight, sleep apnea, swollen red face, eye pain, sore burning and crusty nose, headaches, bouts of gastroparesis, sweats, severe scalp pain and joint pain. I was sent to a Neuro Psychologist who wanted to talk about my childhood problems and schooling. I’m afraid I got rather angry and didn’t go back again.
My Neurologist sent me for autonomic testing. Tilt table and all the tests involved with that were normal. However, the sweat test was anything but. Strangely though, I was told that my pattern did not fit with anything and I was diagnosed with “multiple unexplained symptoms”. Considering this was from a top, highly regarded London Neurology hospital, that was unacceptable and I complained.
I was sent for a small fibre neuropathy test which is a skin biopsy and although the fibres were normal and not decreased, the temperature sensation in my feet was abnormal and the report said this was commonly seen in Sjogrens. My Neurologist had that look of “told you so” on his face.
I then found a wonderful Rheumatologist who diagnosed me with UCTD as I have a really high RF, complement levels up and down and ANA’s speckled pattern visible but not strong enough to give a positive result. He said it can take years for the antibodies to become positive but 9 years? Really?
Steroids work great until trying to wean off so I tried Methotrexate which worked well at first but then seemed to stop working and I got Laryngitis and a chest infection with no white cells to fight against it so had to stop it. Next visit we are going to try Aza.
At the moment I am suffering with swallowing problems, diaphragm pain which makes breathing lying down almost impossible, burning mouth and tongue pain which is causing speech problems, gastric problems and dizzy spells. I also have joint and muscle pain with different muscles weakening daily, a lost sense of smell, taste and appetite and I'm very shaky. I also have degenerative disc disease but I can’t take pred as I have managed to get a genetics appointment and I have to be steroid free for that. I only have 2 weeks more to wait.
I pushed for this as my mother had erythromelalgia and there is a link there with autoimmune disease. She also had bowel problems and so does my daughter now so I’m hoping for some answers.
I have always been so adamant that this is Sjogrens but now I’m doubting myself and worrying as to what else it could possibly be. Tests are slowly picking up on a few things now like optic nerve changes and eustacian tube dysfunction but then on re test they are normal.
I completely understand what all of you are going through and the fight some of you have had to get anywhere. I have had to fight every step of the way for referrals, tests, and just basic acceptance of doctors to listen and take me seriously. This has to change.
Anyway, I am so sorry for rambling on but hopefully my rambles will help someone somehow and hopefully some of you can help me shed some light on all of this.
Thanks so very much and love to you all xx