I am 57 years old female. I felt ill from age 28, gradually getting worse. had an array of symptoms, suspected colitis, fatigue, bells palsy, migraines, dizziness, back pain, neck pain, ear pain, congestion, trouble walking. Sometimes I felt I couldn't talk properly and tried to come across as normal. I had xray and found to have mild arthritis in neck and spine and also congenital dislocated hip, I was told to not do so much. I also got a lot of chest tightness and was given inhalers. I had blood tests, all negative except for low iron , abnormally shaped blood cells. I got to see ENT, neurology,rheumatology. I was dx with fibromyalgia when I was 42. I had eye problems, an optician wanted an urgent referral to orphamologist, but gp vetoed it. The relationship I have had with many medics has been mixed, age 50 I was diagnosed with ehler danlos syndrome type 3. I had hysterectomy aged 47, and had unstable angina and acs dx, though arteries were fine. I have had severe vertigo and my facial appearance changes when I am worse than usual, swelling ,with sunken eyes, at times lost a lot of weight, no appetite, have congenital hiatus hernia, the endocopy caused oesophogitis. One gp said all my blood tests were fine, I hada chemical imbalance in my brain and needed anti-depressants. There has been such a lot of different things ,from age 38 it really went downhill and by age 41 impossible to work. I use a wheelchair as my hip and spine hurt a lot and generally my balance is not good. one physio even thought I might have ataxia. this march I was sent for cardiac ct scan, heart se ok, but there were these enlarged nodes on my lungs, I was never feeling well, and felt I wasnot going to be around much longer. had another ct scan 3 months later showing the nodes were now moderately enlarged. went to see respirastory doctor who asked if I kept birds. Biopsy is on the cards, but worried as because of previous experience, worried about adverse affects and a lot of pain. have had 3rd scan couple of days ago, going for lung functions test soon. I have had ace blood tests which are fine. I think sometimes I am going to go blind or have a stroke. I had a breathing attack the other day, used inhaler but was wheezing all day, and trying to get breath. have had a bad migraine or three days, felt better when a load of rubbish came off my chest. still feeling exhausted. sometimes feel like I have been punched in upper abdomen which keeps me awake, I take morphine for that pain. don't know where this is all going, it is not fair on me or my family. at least I can write this today, as a lot of the time I cant because of pain and painful fingers,wrists arms.
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