Yes i read several of your stories and realised that mine is the same. I was dign in 2010 after being sick for two years. Cronic sinisitus and neuralgia on the left side of my face. Before that Schingles right abdomen and left side of my face. I went to the .GP every week telling him I dont feel well, but did not no were. I went so far as to tell him maybe it is up in my head. Being n old nurse and not a person easily getting down he said no. I saw that my nose was tipped to the left side of my face thinking i always wiped it to the same side with the pain in my face. I went to the ENT guy who said he will take me to theatre and do biopsy of my sinus I refused any other procedure he promised to only do that and a washout. After the op he told me that my nose is very sick. I went home to wait for results. A week later he phoned and said i had this rare Wegener's and have to be admitted for treatment. I went to hospital had grams of cortisone and started on cyclo phos. When i walked out of hospital to the car i said to my husband if i was not sick i am now. My legs felt as if there were no blood in them i was so weak .The next six months at home was hell. I never imagine that you could be so weak and tired. I saw my phisitian pulmonoligist every month or more After one month i was back in hospital on antibiotics tons of it. Back home hell goes on. After 6 Months i went on Imuran and still on Cortisone. Going regulary for bloods x rays scope of my larynx that was one of the first simptons weezing there the Wegs was on my vocal cords. After two half years I went on maintance 10mg cortisone and 50mg Imuran. Of course now i have a Tagicardia of 128 high blood pressure Lesions on the skin, all the side effects of this horrible disease. Now it is more tablets 10 or 12 a day hope they all knew were to go""" Then it is washout of your nose every day otherwise it gets infection You wake up and think ye i feel great today put your feet on the floor and no you not great weak weak. I read a book that a dentist wrote that the mercury in the fillings is so bad he was convinced after 34 years that it caused auto i'm diseases. My gums was another problem away from my teeth bad taste in my mouth so i went to the dentist told him about it he said i will be 40% better if my gums are well. Had dentures top so i had the bottom 11 out in the chair waited 3 months and got the bottom dentures, another story to get use to. But in 3 weeks my general health felt so good I drank Rooibostea and honey my mouth healed in record time. In Sep 2013 i walked nearly 2 km resting but i could not get to the driveway before. I got home phoned my phisian and said. Dr I feel so well write it in my file. two weeks later i woke-up not so good, weezing short of breath, went to my GP he said nothing in your lungs an obstruction in your larynx. I was so disappointed. Bag to the big DRs Scope yes n narrowing was there back to hospital broncho scope MRI lungs bloods x rays ultrasound of my neck name it i had it and....a Angiogram arterys like hoses cant find anything wrong but... i am still short of breath cant shower, rest hang the washing, rest, cook, rest it is so frustrating i am not sick but i can do very little moving around legs don't want to walk. This was last week, my GP suggest i try a inhaler with cortisone i rushed out got one inhale and ye i felt better but this morning after using it no better i read the pamphlet wait four days for full results so there is 3 more days . Dr told me to there is an operation cutting out the ring or do a permanent trachy. Big stuff to live with. I always said if you no to little of to much {like we nurses do)... not nice. I am 63years old, and feeling old because of restricted movement. I use to help people now i am depended on my family and i always say everybody is sorry for the pasient but i am sorry for the carers, it is tough on the family marriage friends yourself. It just seem that the medical world is stunned by this disease there hands are tied so little meds that it is treated with. and each pasient is different. It steals your live. I just want to say to all you out there we have got to hang on.
Bookmarks