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second episode of Wegeners
Hi! site members i have been diagnosed with WG in 1993 at the age of 32 and now 15 years later i had a relapse at age 47 i had forgotten so much of the first incident that the symptoms did not ring any bells although they where a bit different
So here is my story : my name is Normand Desrosiers i live in Montreal Canada back in 1993 i started getting verry tired all the time i sometimes fell asleep at work and the first sign that alerted me to seek help was my lungs they started trembling and i was feverish so i went to see my family doctor and he had me do some lung xrays so iwas first diagnosed with pneumonia so he gave me antibiotics for a couple of weeks but i kept feeling worse and worse so i went back to see my doctor and he reffered me to a lung specialist and the specialist did a bronchoscopy on me and came up with the same diagnosis has my family doctor , he gave me stronger antibiotics a week went by and i was really starting to feel sick and pale looking i started coughing blood coated phlegm and my nose was slowly blocking from wathever substance was hanging there also started to have joint pain in most of my body and several headaches so i went back to see the specialist and he had me do some new chest xrays and he saw sort of ping pong ball shapes all over my lungs and it rang a bell he suspected for the first time that i had Wegeners so he hospitalised me i passed many blood tests an ORL examined my nose and said to me i was a heavy cocaine user and my septum was almost pierced i was so mad at him for saying such an ignorant diagnostic and really didn't have a clue wath was going on with my nose , finally after a battery of tests and intraveinous antibiotics they decided to make a lung biopsy i said No so they decided on a nose biopsy instead so they took a piece from inside my nose and sent it to pathology to examine the sample and that little piece my friends confirmed i had Wegeners, so i spent 2 weeks altogether at the hospital lost around 20 pounds and could hardly walk and had the same texture has the incredible hulk , my nose collapsed (saddle nose) and they gave the prescription for tons of predny and procytox and also antibiotics and sent me home , before i left a young doctor told me if i take procytox it would probably kill my sperm cells not having children then i went to a clinic to get some sperm frozen in case of futur need , i will always remember that moment i was half dead and had to fill this little pot with sperm so i did , went back home and all the emotions hit me at once when i entered the house i cried for a while, when i got to bed that night a sharp pain hit me from my lungs has if you where putting swords in them the next day i went back to see the specialist and he prescribed me some pain killers, afew days later i ended up at the ER with superficial plhebitis in both legs got out with coumadin on my list of pills finally it took me tree months to get well enough to go back to work in my business and the only souvenir of this episode was my nose and my little right finger was really sensitive to cold in the winter months it seemed to have lost good circulation but today it's o.k.
15 years down the line May 2008 i am working graveyard shift at the railway company and start to have chronic headaches and am always tired i blamed on the graveyard shift wich i am not used to for this problem, so one morning i finish my shift and take a coffee and suddenly my left arm and my lips and tongue went numb on me i was freeking out i thought i was getting angina or heart attack so i hopped in my car and drove down to the closest ER let me tell you when you give them those symptoms they open the big door pretty stat , i passed a battery of tests and a brain CT scan and they discovered a hematoma (bleed) in my head having been operated for an AVM in 2005 they thought it was bleeding so i spent one week there in this small hospital a total waste of time they sent me home , i was getting worse so i called in a favor at Notre Dame Hospital where they had operated my AVM and i went in 2 days later by this time i was taking serious doses of tylenol and in extreme general pain and sleeplisness i spent 4 weeks there and had worse symptoms appearing , here is the list: about a dozen of ulcerated wounds on my hands arms and legs, joint pain, my eyes started getting crooked my mouth too i was losing my voice , i ended up in intensive care one day after my heart went tachicardy 185 BPM's that was scary i thought it would jump out of my chest, so tests and more tests i passed all the machines in that hospital for a while they thought i had aids that scared me but they tested that and it was ok, finally the internalists homed in on Wegeners and wanted to biopsy my kidneys and told me i might hemmorage after i said no go for the nose wich had problems by now so they did a nose biopsy result negative so i had no choice i had the kidney biopsy and it confirmed Wegeners, new event my legs again deep phlebitis they swelled like footballs, so this grueling 1 month stay at the hospital was verry depressing i don't remember having one full night of sleep and was slowly going bonkers staying there, they put me on intraveinous eparine for a week and let me go home with my new pill prescription : procytox , eparin , coumadin, prednisone , norvasc, vitamine D , alendronate, pantoprazole, and asaphene, i spent 2 months at camp before i started to feel better and i started back to work on the 01 of December and my only problem now is my legs hurt and half my body is numb and my left middle finger freezes easily , so my kidneys got it this time they where damaged 40% and i am being followed by a nephrologist for my meds and coumadin wath a damging disease it's not easy to fight this one , and sincerely hope i will not get another relapse.
sorry for the lenghty story i had to type it twice because it dissapeared when i pressed the post button, Bye
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