Reply To: Mysterious Disease

November 6, 2018 at 7:45 pm

Hi Kathleen,
I am sorry for your suffering again from this and I hope you find someone who will listen and help you quick!!

I have been suffering for over a year now and I went through SO many testings and procedures (angiogram, upper endoscopy, cholecystectomy and pancreatic neuroendocrine tumor removal) hoping that they find what’s wrong with me, unfortunately, that was not the case. All this was done in Qatar, where I was working as a teacher. The neurologist in Qatar said this is ALS despite the fact that my symptoms (i. e. pins and needles, tingling, prickling, areflexia) did not match ALS. I finally came back to the states, visited my PCP, she transferred me to a neurologist and put me on low dose prednisone to help with weaknesses. It helped a little but the dose was too low. meanwhile my neurologist conducted all his blood work, EMG & NCS. the NCS & EMG showed abnormalities, however, he was not able to reach a diagnose because I didn’t fit neatly in any one box. So, he referred me to see a neuromuscular specialist who ordered a gamit of blood work as well, in addition to the blood work he wants an MRI of the brain and a lumbar puncture. that’s why I was concerned about the lumbar puncture test with me taking the prednisone and nothing will show on it and I am back to square one.