And It's About Time There Was Some Support For Cushing's!
I realize that this is for a different disease, but the "story" sounds all too familiar...
From http://www.med-help.com/Page24.html
BY: MARK NORWOOD (6/5/98)
In 1990, I was diagnosed with EBV, or what is now called Chronic Fatigue Syndrome or Myalgic Encephalomyelitis. Three different doctor's went as far as pronouncing that I had AID'S, that's how server my symptoms were. Fortunately after a year of repeated testing and a HIV by PCR was done, all test came out negative, so I didn't have AID'S, but I did have a extremely high EBV titer at the time. (but that's before they found that the EBV titers were unreliable, because it fluctuates from high to low regardless of how you feel.) In 1991 I have seen several Doctor's who knew the symptoms are there, but could not pin point what it was, because the aid's test was negative, and they could not find a definite medical diagnose, no one knew what to do with me, so I found a doctor who was treating me at the time who sent me to Stanford University in Palo Alto Ca.
It seems that this strange disorder which at the time I knew nothing about, puzzled him. So I was seen at Stanford, all they did was talk with me awhile, did very little testing, and came up with the conclusion that I was "nut's" because of the various symptoms that was going on with me. The doctor there wanted to commit me to their psychiatric unit, they said I had somatization disorder or MUNCHAUSEN Syndrome. This devastated me, while I thought this can't be, I'm a nurse and I know well enough that there is definitely something wrong with me, I just didn't know what it was--if my mind was only "that" powerful (boy wouldn't that be great, think of the possibility!) on a serious note, being a nurse, and going through this I had to seek, find out what is wrong with me. Well a year later I receive a letter in the mail stated that they (Stanford University) was very sorry, and that they wanted to see me again, because they are now treating Chronic Fatigue Syndrome (for they did not acknowledge CFIDS at the time) I thought wow! that's great, they are finally getting their act together. Come to find out someone had sued them who had this disease. But after seeing them, they said that they came to this conclusion that this is a disease, but they had no idea or know much about this disease. I presume they had to see people with this disorder so they didn't get sued again. This is ridiculous, so on my medical records I got written down, somatization disorder or MUNCHAUSEN or in other words, like I'm making this up, just to get attention. Believe me after seeing many various doctors and having unpleasant, tidious, painful, and frustrating experience, I hated the medical profession let alone seek their attention! PLEASE! Doctor's give us a break!
Around 1995-96 I thought that I was getting some what better there for a while, but unfortunately it did not last long. After using up all resources and many times over,( I'm embarrass to admit it ) but I wanted to commit suicide, and I truly believe that If I wasn't a God fearing man I honestly would of. But God is faithful, and his abundant Grace gives me hope every time I felt that I could not go on. GOD is good! I was bless with a new Doctor who specialize in CFIDS, Fibromyalgia, and is doing extensive research in this area. He has done many tests and stated that I deffenatly had an extreme case of Chronic Fatigue which turn to fibromyalgia, the virus has mutated in my body to where it started destroying my muscle tissues, my CPK'S will go into the thousand's (which is only found in patient who had or where in a massive car accident) SED rate jumping up and down and all the lab work including liver functions etc. where going crazy to extreme abnormal to normal and back again. But those other Doctors who could not figure why this is so, and they could not pin point a specific "medical diagnosis" some still label me as having somatic disorder, or say it is just a virus or something. It is just pitiful that Doctors do not take the time to read about it or research this type of disease-- there's plenty of information in the internet, not just my site, they should find out what they are dealing with get some idea before they start labeling people (pt.) as "NUT'S" It looks terrible (not to mention -we feel terrible) especially on paper and on "our record" as such, especially when you are unable to do anything not to mention simple task as daily living skills.
You find your self in a rut, and the feeling of helplessness is overwhelming, because you are unable to work and take care of your family, let alone take care of yourself, and it's terrible when your trying to get help like Social Security so you can live, and the Doctor puts in their that it's somatization or MUNCHAUSEN disorder. And that you are out just seeking "attention" that your making up this disease to get medical attention. I'm a nurse, I was making Good money- I would rather go back to work then to be disable and receive what little SS I get which barely is enough to make it, (don't get me wrong, I am very grateful for it, for without it my family and I would likely be living in the street), but what I would give to be able to play ball outside with my son, or to go for a walk with my daughters, or to give the appropriate attention to my wife, and most of all to be able to sleep and get up with out pain, to get up on my own, to do simple daily living skills, things I took for granted when I was healthy. So it upsets me so for Doctors to say we are just seeking attention, or we are making things up, angers me. It is down right ignorance on the part of Doctors. Such ignorance must be stop. It must come to an end. This is the reason why I am writing this article, for recently I went in to see my Doctor who is one of the foremost at this line from the beginning, researching this disease, which he also calls it Myalgic Encephalomyelitis told me what this "cardiologist" had written as part of my diagnosis--"MUNCHAUSEN Syndrome". I had to see a cardiologist a few months back because I was having frequent chest pain and lab work put me in the vicinity the area of a possible clog arteries, and x-ray showed possible blockage, so this was simply to r/o scenario to make sure it wasn't just myocarditist cause by the Myalgic Encephalomyelitis or Fibromyalgia, so my Doctor referred me to a cardiologist who did an angio, Thank GOD it turn out fine, but this Doctor (and if you call up his office, the message states that they work with your doctor and that they talk with them and how they would get the low down on everything, and find out exactly what is wrong with you this they promise, any how this Cardiologist never talk with my Doctor, not even once on the phone, to find out exactly what is wrong with me, he decided on his own that I had "MUNCHAUSEN disorder", without even knowing my medical back ground. Fortunately my Doctor has had many if not all his patients labeled as "crazy" and he states that all are respectable, with previous well paying jobs who unfortunately contracted this debilitating disease. I am fed up, something has to be done, I know many of you are suffering with this disease and is going through or has gone through this before (there may be some of you who did not have a hard time with doctors count your self very fortunate) but for many of you who is suffering, you are not alone, and I intend to do something about this hardship we have to face, GOD willing, he gives me wisdom. Some thing has to be done, if I have to send copies to every Doctors this letter and any and all information that's out there in the internet, and things on my site, so they can read and learn this REAL disease that we are suffering with. This is world wide not only here in the US, but in the UK, in Ireland, it is a world wide epidemic, like the "Gulf war syndrome" it is so closely related to MS in a matter of fact, if you were to get the best explanation of this disease, it is in the middle between MS and Lou-Garret disease, as far as the disruption and progressiveness and debilitating process. Doctors who are not informed, and those who can't understand it unless they hear it from someone in medical school or if some famous person ends up with it and it is written about it, until they they take that first step to read and learn about it, I'm afraid that you too may be considered a "NUT". GOD willing, I would like to put a stop to it.
BY: MARK NORWOOD (6/5/98)
