my name is Anna, I am from Southern Bavaria. I would like to tell my story for all of you who have been sent home by doctors over and over again, since they didn't read the signs correctly. Or maybe because in their opinion there were merely symptoms visible, but no real illness to diagnose. Or maybe simply because with all those symptoms I, like so many other patients, was simply put into the "psychic" box.
I was diagnosed with cerebral vasculitis in 2003 in connection with glandular participation . Additionally an ostheoarthritis was suspected because I suffered from Psoriasis pustulosa with a suspected insulinoma, because I constantly suffered from either high blood sugar or low blood sugar, vertigo, multiple allergies and tics in my hands and my head. Even my eyes deteriorated rather suddenly. Alltogether my odyssey ended in a three-month stay in a hospital until I was allowed to go home again.
When I was told what I was suffering from I simply didn't want to accept it. I have been under the impression that there is a reason for my illness - more on that later on. My family's reaction was to tell me I had "vascular disorder due to my smoking". They told me I was suffering from attacks of panik because I hadn't been outside for so long. The most painful sentence they said was that I should decide if I was really sick or if it was "just in my head". That reall hurt. Due to my illness my partner has left me. Today (2010) my illness has again fully flared and I am taken even less seriously than in 2003.
I met 3 professors who told me that I wasn't sick, that I should undergo a therapy in a psychiatric clinic to get rid of my anxiety disorder. I was suffering from anxiety because I was constantly dizzy and couldn't see and hear properly. I was told that I was still processing the death of my father who had died three years earlier. Another doctor had a look at the x-rays of my spine and told me I had just six months before I would die. Others were trying to take biopsies of my spine because they were looking for cancer, but they didn't find anything. When the clinic that finally diagnosed me correctly asked for the biopsies they found out that the biopsies had not been done correctly. They had taken some parts of the muscle and the biopsies couldn't be used for anything. Still I sufferd from pain at that part of my body for two years. I extracted pieces of thread from the wound - again and again. I had been told that they would use thread that would dissolve - even that information had been wrong.
I then phoned my family-doctor. He had always believed me. Crying I told him what was wrong with me, and he finally helped me. I was sent to a clinic where I was told how sick I was, and that I wouldn't be sent home until the doctors knew exactly what was wrong with me and found the proper treatment for me.
Today - 2010 - I live in a small town in Southern Bavaria. Things seem to happen the same way they happened back in 2003. When I felt not well again I went to the local doctor and asked her to send me to a radiologist. I told her about my illness, told her about my trachicardia at night, that I couldn't sleep and was suffering from night-sweat. I told her that she could have all my diagnostic papers. She told me all I had was a migrane which would go awy on itself. I was to take some medication (Saderiston - a herbal medication containing valeriana and lemon-balm against anxiety) which would help me.
Things got worse. Again I myself called the ambulance. And once again I was brought into hospital where I was looked upon with pity, because once again it was thought that I suffered from panic attacks. As so many times before I said that I was suffering from an autoimmune disorder and from where they could obain my diagnostic papers. I stayed in hospital from Friday until Tuesday, when a doctor came and asked if a colonoscopy could be done. I agreed. The doctors found an inflammation, at least that is what I was told, but on Thursday I was told I could go home, because I was suffering from psychogenic attacks of vertigo. Shoud I be frightened of going home due to anxiety I could, of course, stay a few days more. I was told to urgently visit a neurologist. The papers stated "psychogenic attacks of vertigo". I contacted a neurologist to get a date but was told that with this diagnosis getting a date was not all that urgent. I was given a date in six weeks time. In the meantime I felt bad, so I visited my daughter.. On the second day of my visit I collapsed and landed once again in hospital. I wasn't taken seriously - again! At least they sent for the diagnostic papers, and after having had a look at them stated that I was ill. The doctors were honest enoght to tell me tht they couldn't cope with this illness. I should rather go back to the clinic in which my illness had been diagnosed. So I went back.
My illness is still the same, but it has gone worse. Right now i am allowed to be at home for three weeks, becaue my gallbladder has been removed. I need another MRT and then have to go back into hospital so that my medication can be set right. The staff is not nice at all. I think I'd rather drop dead than go back to them, because they only smiled pitifull at me and asked me to go to a pschiatrist. The staff of the Kitzingen-clinic was really nice, should they have not taken me seriously they were polite enough not to let me know. The doctor was even honest enough to tell me that he had had doubts when I told him of my symptoms and my illness. In Bad Brückenau Clinic I am still being treated well. Two nurses had once suspected that I had a drinking problem (due to my tremor) but today when I say "I feel like fainting" a doctor is called. What a difference to the place I am at now where they tell me they would tell the doctor right away, but where the doctor hasn't visited me to this very day.
The public health officer has declared me well enough to work for six hours a day in a warehouse. His diagnosis reads "panic attacks in combination with sociophoby". What a discrepancy: The pension office put me on 70% right away, but the health officer, having all my papers, tells me I am able to work!
My medication is Panthozol (Pantoprazole), ASS 100 (acetylsalicylic acid) and Atosil (Promethazine). The basic medication since 2003 has been 150 mg Imurek per day plus prednisolone for the acute phase. Now I will have to wait until my next hospital stay in about 3 weeks when my medication will be newly adjusted. Right now I am not suffering from any side-effects of the medication. Imurek caused an elevated heartbeat and sweating. Plus roughly 1 hour after taking it I started shaking rather badly. Prednisolon had caused weight-gain of about 30 pounds, I am afraid of it happening again after the readjusting of my medication.
Meine Medikamente, die ich zur Zeit nehme, sind Panthozol, Ass 100 und Atosil Tropfen. Die Basistherapie war ab 2003 Imurek 150mg am Tag und Prednisolon für das Akutstadium, jetzt werde ich erst wieder bei meinem nächsten Klinikaufenthalt in ca. 3 Wochen eingestellt. Die Medikamente, die ich jetzt gerade nehme, verursachen keine Nebenwirkungen. Das Imurek hatte bei mir Herzrasen und Schwitzen ausgelöst. Auch habe ich stark gezittert ca. 1 Std. nach der Einnahme. Vom Prednisolon hatte ich 15 Kilo zugenommen. Ich nehme an, dass das jetzt auch wieder so sein wird, wenn ich neu eingestellt werde.
The illness has had a strong impact on my every-day-life. I live a life on my own, I don't have any friends anymore. I guess the main cause is that most people simply cannot understand me when I tell them that I am not feeling well, or that I cannot walk for a long distance, or that I cannot go shopping for long/ cannot sit in a cafè for long/ cannot go swimming/ cannot go to a sauna. All that does only work on my good days, when I am feeling well. On those days most people have to go to work. Most people don't even believe that I am ill, because I don't look ill. Hardly anybody has ever heard of my illness. Some even asked: "So where have you been operated then? What kind of cancer was it again?"
Even my daughter, who is a nurse, said: Mum, you're not suffering from anything serious, just bad blood-flow, because that is what "vasculitis" means. I suffer a lot from not being taken seriously, not even by my own family! The most challenging part of this illness is that it has so many symptoms and that there are hardly any doctors who know how to treat it. When the symptoms are really bad I could literally run into a wall. Sometimes I wish all this would simply end. I guess that is the psychological aspect of the illness. Sometimes I go shopping because right then I fell well enough, and all of a sudden I suffer from weak legs and vertigo, I panick, and as a consequence I hardly ever leave the house. It is a vicious circle in which I sometimes ask myself whether I am really ill or whether I should go to a lunatic-asylum. A support-group nearby would be ideal, because everbody would know what it is like to suffer from this illness, we could help and support each other.
The internet has helped me a great deal with my illness. I just had to write this report, because since February everything seems to be falling apart and I feel like loosing everything because I am not able to work. I noticed that the illness is mainly caused by a trauma. It was that way with me back then and it is the same thing now. I noticed the same thing in others as well. Knowing about this does help a lot. I have been living for five years without any medication and without feeling bad, I didnÄt even consult a doctor during that time.
Well, I guess that is all I wanted to say, sorry for any misspellings, it all started when the "explosions in my head" happened.