Mystery Illness?

By Anonymous November 7, 2011 - 1:26pm

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I need help trying to figure out this mystery illness i have been batteling for the last 5 years,except I am not real sure the part I need help on weather it is finding a diagnosis or finding a compitant,understanding doctor who can help me because as of now I have absolutely no confidence at all in doctors. A little about what I have been experiencing, started with blurred and double vision,very dizzy like i was on a merry go round and the shakes pretty bad. That is what prompted me to go and see my PC they were concerned so they had me get an Mri of the brain wich revealed multiple lesion in both cerebral hemipheres at the gray white matter junction and a larger lesion in the posterior pareiatal lobe..so with that I was referred to a neurologist to rule out Ms even though mri stated that lesions where atypical for ms. Saw neurologist who did an EVP wich came out normal and so I was told he didnt think it was ms that it was from migraines.I have never had a migraine in my life and i live with a migraine sufferer and no what migraines are. I was given meds for migraines none of wich worked for the symptoms i was experienceing. I continued to develop more and more symptoms such as muscle weakness,severe short term memory loss,joint pain, nerve damage in the arms and legs,severe stomach issues blood in the stool, i developed open angle glaucoma at age 24 along with optic neuritis off and on,problems with my heart,i have become very fragile anything that touches me with even the littlest pressure results in very painful bumps,severe dry eyes mouth and skin,blisters on the hands and feet and one leg,I have lost 30% of my hearing in both ears,my teeth are falling out,chronic recurring bronchitis,hair loss,episodes of complete numbness on left side of face,heat and cold intolerance,medication intolerance,every infection that comes along i get...I have been treated for h.pylori,samonella,shigella,e.coli,epstein barr virus. i have seen many different doctors including a neurophyciatrist. I have a positive ana but they cant link anything else to it. I have so many symptoms and I have all of my medical records that show everything when I go to a doctor i always thought that was the best thing to do but i discovered that i am just paying for them to look at what i have already had done and i have gotten some of the most horride responses. One doctor told me well looks like you have had all the tests I can think of done so I guess you are in that category of WE just dont know so last thing I can recomend is a physciatric evaluation. I had that done he told me I need to be seen by a neurologist. Two different doctors told me "well you have been trying to figure this out for 5 years and you are not dead yet so it cant be that bad". What kind of a person let alone a doctor says something like that. I am very sorry this is so long and there is still so much unsaid,I just want to be normal again and not hurt everyday of my life I need to figure this out but no doctor is willing to help me!!!!! Any insight would be greatly and deeply appreciated. thank you very much in advance!

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Maryann Gromisch RN Guide

Your pain and frustration is apparent in your message. I wish that I had something to offer you beside a friendly ear. It sounds like you are experiencing a type of autoimmune disorder. An autoimmune disorder is a condition that occurs when the immune system mistakenly attacks and destroys healthy body tissue. There are more than 80 different types of autoimmune disorders. You mentioned that you have been seen by a wide range of physicians and undergo a multitude of diagnostic testing. I can only suggest starting at ground zero with a new internist, who can look at your symptoms with a fresh eye. Wishing you the best, MaryannNovember 7, 2011 - 5:48pm