Hi, I am just about at wits end. I am 40, diagnosed with SLE at 26 after + ANA with typical pattern + high titre, multitude of symptoms. Since then was tried on Plaquenil which was a disaster, made me feel dreadful. Extreme fatigue, weight loss, fevers, especially in evening, regularly around 38.2. Always my fever goes up with physical exertion, has been known to go up to 39.2 or higher when I do something like mow the lawn or rake leaves (sounds patyhetic but in my defence we do live on a steep block). Had terrible reaction to Doxycycline that I was given when I developed ulcers on my abdomen and back after working in the tropics. Again at this time I was suffering from extreme fatigue, muscle soreness and I have always been extremely weak in my upper body. I have often had episodes of choking on fluids when tired and last year was finding it hard to get food down. I started losing weight, was extremely tired, sore, weak, had trouble hanging up washing, lifting my small children. Had times when I just had to lie down. Started to feel like I had a tablet caught on L side of throat all the time, also developed a fine hand tremor intermittently, was getting very short of breath doing the slightest exertion, got chest infection that hung on for ages and was treated with Erythromycin and then everything got even worse. Went on Prednisolone for "SLE" before could get to see immunologist which helped a lot. Bloods showed no SLE or inflammation. Went off steroids as not wanting to take them if not knowing what is going on. Raised white cell count (6-11). Found benign thyroid tumour on R, hemi-thyroidectomy 5 months ago did nothing to relieve the worsening feeling of lump in throat and voice changes, getting hoarse when tired and fading out altogether at times. Now feels like the lower part of my throat doesn't function properly when I swallow and the whole L side of my throat feels pressured along the pharynx. Have to swallow water to get food to move down when eating. Have lost 30kg. Still have afternoon/night fevers. Saw pain management dr who suggested that it sounded a lot like myasthenia gravis. Had so many symptoms over the yrs investigated, like nystigmus, visual blurring, photo-phobia, chewing difficulties and jaw pain, frequent chest infections "pneumonitis" (could never culture organism at rapid onset of dysponea, high fever and closely followed by highly productive cough of only white cells), searing pain across my lower ribs at back, joint hyper-mobility with subluxation and dislocations occasionally slurring words and dribbling when speaking, shortness of breath, slow gastric motility and GERD. Life has ground to a halt, betting very desperate to get the right answer so I can get on with it. Any suggestions or advice?Reply Follow This Thread Stop Following This Thread Flag this Discussion
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