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In process of possible DX and have Questions
I feel so fortunate to have found this forum. I am inspired by everyone's courage and support and hopeful you can provide some direction to me. In FEB of this year I was a very healthy 41 yr old male who worked out with high intense 3x per week. Out of the blue I felt a general malaise and lost my energy. Thinking it was temporary, I didn't worry much. I then started experiencing some chest and throat inflammtion(my term) that would occur randomly. Felt like asthma which would come and go and occasionally severe dysphagia. I described it to my DR as a choking like feeling right at the base of my neck along with chest tightness with occasional wheezing. Soon after I started having low grade fevers and flushing. I lost 14lbs off of my smallish 150 lb frame. I had a CT scan and the DR said everything was fine only "benign granulanomas, and a mucous plug" which he jokingly said I needed to cough up...but didn't make sense at the time because I didn't need to cough. After the symptoms continued and I complained more about my throat swelling he (endo) ordered a Barium Swallow. After it was complete the resident while reviewing the pics asked "Sir where are you from" in kind of an ominous tone. I told him and then he left the room. He came back about 15 mins later and stated he was sorry if he scared me but he thought I had first had a hiatal hernia but upon further consult with the DR he said they were granulanomas(again!). I immediately went back to the DR stating that it had been 2 months and over many tests the only thing that kept showing up was granulanomas. I still feel horrible and have asthma like attacks with throat swelling. He assured me that the granulanomas were perfectly normal and benign. Then I started developing some neuropathy in my lower legs from the knees down. Constant fasicualtions and numbness. When I moderately exercise, like walking(because thats the best I can do with my fatigue) my veins start swelling up and get painful, like a burning sensation. I have had a lot of muscular wasting (with loss of weight) and combined with the fasiculations, I went back to the DR. He said everything was fine but you need to see a neurologist. I reminded him of my main symptoms: fatigue, weight loss, lung and throat inflammation/flares, reduced pulmonary capacity, and now some type of lower leg neuropathy.by now I had become suspicious of Wegeners because of my symptoms and then finding out that the neuropathy and vascular issues are Wegeners too. He looked right at me and without me barely getting the words out. He said "you don't have wegeners." I had an EmG Monday with no results yet other than DR said no MND such as ALS. Haven't lost any strength, just the symptoms I have had from onset are worsening. I have a dry cough on occasion but my lungs burn and from time to time get asthmatic sand I have to go in the bathroom and run hot water to open the airways. It's been 4+ months, same symptoms, worsening vascular condition/ neuropathy in legs along with lung impairment. Should I get a second opinion
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Originally Posted by Lightwarrior
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