Discussions By Condition: I cannot get a diagnosis.

SLE and chronic fevers being tested for myasthenia gravis, help please

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • February 9, 2011
  • 11:26 AM

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?

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  • hyper-mobility with subluxation and dislocations That it think gave a huge clue to what your issue may well be. Have you had Ehlers-Danlos syndrome (EDS) completely ruled out? There are many different types of this and there are so many different symptoms it can cause.. following quote is from wikipedia http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome Signs vary widely based on which type of EDS the patient has. In each case, however, the signs are ultimately due to faulty or reduced amounts of collagen. EDS most typically affects the joints, skin, and blood vessels, the major signs and symptoms include:Highly flexible fingers and toesLoose, unstable joints that are prone to: sprain, dislocation, subluxation (partial dislocation) and hyperextension (double jointedness) Flat feetJoint pain without inflammationFatigue, which can be debilitatingHigh and narrow palate, resulting in dental crowdingVulnerability to chest and sinus infectionsEasy bruisingFragile blood vessels resulting from cystic medial necrosis with tendency towards aneurysm (even abdominal aortic aneurysm)Velvety-smooth skin which may be stretchy and is often translucent, with blue veins clearly visible on limbs and particularly in the handsAbnormal wound healing and scar formation (scars may appear like cigarette burns)citation needed]Low muscle tone and Muscle weaknessEarly onset of osteoarthritisCardiac effects: Dysautonomia typically accompanied by Valvular heart disease (such as mitral valve prolapse, which creates an increased risk for infective endocarditis during surgery, as well as possibly progressing to a life-threatening degree of severity of the prognosis of mitral valve prolapse) Unexplained "pins and needles" or numbness in extremitiesDifficulty regulating own body temperature, resulting in a vulnerability to the cold and heat. Many patients suffer fatigue and dizziness when exposed to hot conditions, eg. having to sit outside on a hot daySevere mouth ulcers. Many patients complain of having several mouth ulcers at any one time. This is believed to be due to tissue fragility and vulnerability to infectionFood allergies and intolerances are very commonSensitivity to medications. One of the cruelest aspects of EDS is that many patients experience bad reactions to medications, such as pain killers, making it very difficult to find safe, effective pain managementMigraines and headachesFibromyalgia symptoms: Myalgia and arthralgiaOther, less common signs and complications may include:Osteopenia (low bone density)Talipes equinovarus (club foot), especially in the Vascular typeDeformities of the spine, such as: Scoliosis (curvature of the spine), Kyphosis (a thoracic hump), Tethered spinal cord syndrome, Occipitoatlantoaxial hypermobility, Arnold-Chiari malformation (brain disorder)Functional bowel disorders (functional gastritis, irritable bowel syndrome)
    taniaaust1 2,267 Replies
    • February 12, 2011
    • 06:38 AM
    • 0
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  • i dont think my other post went throu, so Im trying again. Check out all the symptoms of this, this may be your issue or at least part of it. It will give you issues with fatigue and make you predisposed to chest infections along with giving you many other symptoms. Your hypermobility leading to dislocations, point to that this could be your issue. http://en.wikipedia.org/wiki/Ehlers_Danlos
    taniaaust1 2,267 Replies
    • February 12, 2011
    • 07:09 AM
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  • i dont think my other post went throu, so Im trying again. Check out all the symptoms of this, this may be your issue or at least part of it. It will give you issues with fatigue and make you predisposed to chest infections along with giving you many other symptoms. Your hypermobility leading to dislocations, point to that this could be your issue. http://en.wikipedia.org/wiki/Ehlers_DanlosMany thanks for that, I had suggested EDS to my immunologist some time ago, he didn't seem to think that met the criteria for it, skin not stretchy enough, no high arched palate, he thought that it was a connective tissue disease, not specifically given a name. Although I do seem to have many of the other things you list inc. IBS, reflux, gastritis, multiple mouth ulcers, when I was younger they would punctuate the base of each tooth & some times join up, thankfully not so many recently. I have also been found to have slow gastric motility, sores on face & back that come up, form ulcers, crust & take forever to heal & do indeed look like cigarette burns. Endometriosis, migraines, I have starring in my vision in bright light (computer screens, sky etc) I do have very flat feet and twisted my R ankle so badly that I've had a reconstruction at 39 (need R knee ACL done too, putting it off at pres) I felt like the orthopaedic sideshow when the surgeon called his mate in to see how flexible I am. Thanks so much for taking the time to respond, life has been very difficult recently, I really want to get a definitive diagnosis so that I can get on with life.
    Anonymous 42,789 Replies
    • February 13, 2011
    • 10:47 AM
    • 0
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