I'm a 35 year old woman. I have suffered from intense abdominal pain for 11 years. We went the endometriosis, full hysterectomy route (9 surgeries in all), but that didn't help. I was having chest pains and trouble breathing, then I got so weak that I couldn't walk or stand up. My vision was affected, I was having hallucinations, and finding it was difficult to stay awake and be in a conversation because I was experiencing some mental confusion. We did a few EMG's and I had neuromyopathy. But that didn't account for muscle weakness. They found out I had an adrenal insuffiency, which was secondary. The CRH test determined that the Hypothalmus wasn't sending the message to the pituitary to send a message the adrenal glands to make ACTH. I also have primary hypothyroidism. I failed the tilt table test. I definitely have an autonomic problem, but we are struggling to find the cause. The doctors gave me prednisone for the adrenal insufficiency, but said that alone did not account for the severity of my symptoms. I'm being treated for Porphyria, but my doctors aren't thoroughly convinced that I have porphyria because my porphyrins are high, but not high enough, but there is excess in Urination and all the classic symptoms of porhyria. I've been on Panhematin, or Heme, for almost two years and I feel so much better. Not totally normal, but much better. What other type of disease or syndrome would respond to the Heme besides Porpyria. I'm even making more cortisol sometimes.
I am 42 and my GP told me my Autonomic Nervous System did not work properly. In August 2006 I started getting a sharp pain in my throat and kept losing my voice. My GP said I needed a Gastroscopy but I could not see the corelation. By Jan 2007 I was burping almost continuously and my BP kept dropping very low - 80/50, 50. By Feb 2007 I was bringing up CUP FULLS of gastric acid almost hourly and sometimes bile and had severe pain in my right upper abdo going towards by right shoulder blade. My diet was very bland and bordering on minimal at that stage. I was put on Antibiotics as I had a high temp continually. Ultrasound of upper abdo was normal. I was booked in for a gastroscopy which was due in July 2007. Managed to see ENT spec sooner because of Vertigo and he said my vertigo was related to demyelination in my brainstem which was diagnosed 4 years previous ( related to myoclonus, fasciculation, tremor, foot drop, migraine variants) ENT spec also said my vocal cords were lesion free but the demyelination possibly of the vagus nerve was responsible for the strange voice and my adult onset asthma which had recently worsened and the reflux. That was May 2007. 2 months later the ulcers had all but healed as shown on gastroscopy due to the Nexium my GP tricked me into taking. So by then I was on thyroxine for hashimotos, ditropan for hyerreflexive bladder, and a preventer and reliever for asthma. And GP then put me on transexamiic acid for flooding when I had my periods. My BP was that unstable it was left alone.
Back 5 years ago when the Neuro said I had demyelination he said it commenced in the brainstem and affected the basal ganglia aswell. It didn't show on the MRI 's I've had as the ventricle spaces get bigger only. No plaques. Two years ago when I asked my GP for a diagnosis and I said it sounds like a Parkinsons Plus Syndrome he would not say anything. However since then my new GP (she said the 'old one ' could not handle seeing a long term patient of his deteriorate) has used the term multiple system failure.
I had a kidney infection in Sep 2007 severe, Temp 40.2 degrees celcius and fitting. Put on intravenous bolus dose of antibiotics and more ABs. This infection gave me a brachial plexus neuritis and winging right shoulder blade ( infected long thoracic nerve and accessory nerve) so my voice is even more funny.
Because of the infections my neuro has ruled out plasma pheresis for me which originally I was told would get rid of the antibodies that were attacking my myelin.
Autonomic dysfunction is largely related to the vagus nerve and vasodilation and constriction affecting BP and sweating. I also have dry eyes and mouth. Lupus was diagnosed in Jan 2007 just before the gastro thing taking hold. I had suspected that for years as I had joint pain and malar and other rashes but as it was mild my 'old' GP decided to keep that from me.
My question is did the Lupus cause the demyelination as I started getting the malar rash from when I was 7 years or what?
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