Ernie Posted December 13, 2007 Report Share Posted December 13, 2007 Hi,Today is the anniversary of when I lost my regular life and became disabled overnight.This afternoon I was having a blood test and as I was telling the nurse about it she told me she is always trying to be positive and said that I could be much worst. I told her that I felt really insulted by her comment as she does not know what I go through on a regular basis. I gave her a brief history of my 3 months stay at the hospital at the beginning of 2007 and she apoligized for her comment.I can't believe that 8 years have gone by. When I first got sick I thought it would be for a few days, then a few months, then 6 months, then 1 year. One day I got the diagnosis of Munchaussen and that really got me going to find the real diagnosis and sent me to NIH. Now I have the medical proof that I have a physical disorder, I have the respect most of the time of the medical community. I have an acceptable quality of life even if I can't work and can't do much but I have accepted to live with it.I spend most of my time helping my family members getting tested for POTS and NCS and going to their doctors and making sure that they are not treated as nut cases. I am caring for my family and for myself because I hope that one day we will have better recognition and better care. All the medical proofs I have gained in my own medical file is usable for my other family members because we have the same genes. This is the advantage of being a large group. When I first started 8 years ago I was all alone. Sometimes I feel like going to see the well known neurologist who diagnosed me with Munchaussen and show him all the medical report of my family who also have "Munchaussen" and see his face!!!! I guess his ego whould go down the drain for a few minutes! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted December 13, 2007 Report Share Posted December 13, 2007 This milestone is painful I know, Ernie, there is nothing that can make the disability go away. I am glad you came here and joined, I am glad for the opportunity to have you in my POTS messed life! You have made my journey a bit easier. I even got to meet you for a brief moment in Canada! Just know when you are feeling the rush of the pain of the bad medical care, especially on a day like today, you are not alone anymore.You have a lot of people who want better for you and for everyone.Warm hugs and wishing you better things to celebrate,tearose Quote Link to comment Share on other sites More sharing options...
Maxine Posted December 13, 2007 Report Share Posted December 13, 2007 Ernie,I really understand the way you feel. I know the feeling of not being taken seriously------------it's a terrible feeling. No one would understand except those who have been through this.I know there was more then one occasion that you got so bad, and you were still not taken seriously. You know what file that neurologist can but his Munchaussen diagnosis----------------- Even if you went to him now, you probably still couldn't touch his EGO, as he's not stable, and doesn't know how egocentric he is.He is the one who needs psychiatric help----------- I commend you for all the advocating you do for your family to save them from the same heartache you had to endure all these years.If you notice my avatar------the look on the face, and the body pose. The look of scepticism............. That's how I feel about a large portion of the medical community. Can you picture this look on my face............I hope your health will be as stable as possible for you Ernie, and you will have a decent quality of life until more answers are found by the handful of brave doctors who dare put their EGOS on the line.HUGS,Maxine :0) Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted December 13, 2007 Report Share Posted December 13, 2007 Sorry I don't know your whole story and everything, but it sounds like it has been a long and hard journey. Hopefully with all of the doctors and treatment your family is getting you will all see some relief.I wonder why Munchaussen's? That is awful, that is all that they could come up with! I am glad you found a different dr! Quote Link to comment Share on other sites More sharing options...
lalalisa Posted December 13, 2007 Report Share Posted December 13, 2007 Ernie,Thanks for posting about your 8 year anniversary. I'm sure this is such a difficult time for you. I too am thankful for your life and presence on this forum. I appreciate your consistency and care. It sounds like you are really a blessing to your family as well!! That's so neat that they have you to lean on and be there advocate during difficult times.We appreciate and are here for you! Lisa Quote Link to comment Share on other sites More sharing options...
morgan617 Posted December 13, 2007 Report Share Posted December 13, 2007 Ernie, 8 years can feel like a minute or a lifetime. With this illness, it's a lifetime. The only decent thing is that you have made progress in getting some answers, but that doesn't cure you and is often cold comfort. Sending you hugs and good thoughts. Keep fighting and tell mr munchausen he needs to go to a school of psychiatry if he wants to make those kinds of proclamations!morgan Quote Link to comment Share on other sites More sharing options...
pat57 Posted December 13, 2007 Report Share Posted December 13, 2007 Keep fighting and tell mr munchausen he needs to go to a school of psychiatry if he wants to make those kinds of proclamations!morganindeed!I see from you signature that you are feeling better Ernie - lets hope its a trend! Quote Link to comment Share on other sites More sharing options...
Ernie Posted December 13, 2007 Author Report Share Posted December 13, 2007 Sorry I don't know your whole story and everything, but it sounds like it has been a long and hard journey. Hopefully with all of the doctors and treatment your family is getting you will all see some relief.I wonder why Munchaussen's? That is awful, that is all that they could come up with! I am glad you found a different dr!Just a quick answer before I leave this morning.The Munchaussen diagnosis was given 8 years ago on the basis that the neurologist had never seen in his 25 years of career a case such severe has mine. I was fainting every time I was standing within 2 minutes. So, since he never saw that he though that it did not exist in nature then I must have been poisoning myself.Eight years ago he was listed has the number 1 syncope specialist in Canada and he was the first one I saw. Whenever I went to see another one for a "second" opinion, the other would always call him to get his opinion because I am such a complicated case. He would always tell them about the Munchaussen disorder. So I had no way of getting a real diagnosis. The only way out was to go to the States and get a fresh start. The irony in this is that this neurologist was on the board of doctors who selected the criteria and symptoms to qualify for POTS along with Dr Grubb. He also studied at Mayo! Proves that qualifications is not everything! You need a brain!So I was diagnosed by Dr Grubb by the same TTT that this neurologist had me do and then I called NIH and was accepted because I am a rare bird (with the same TTT again that I was diagnosed with Munchaussen!) and because they had never seen such a severe case like mine in 25 years! They gave me the medical proof that I was physically sick and they were "happy" to know that many of my family had the same disorder. This confirmed that it was genetic.Now I have found another syncope specialist in Montreal. He is a researcher as well known as Dr Goldstein and he travels the world to teach. I am on his research protocols. He does not take knew patients and does not do clinics but he took me in, again because I am a rare bird. He accepts also my family members as a favor to me!Being a rare bird is a double edge sword. Either doctors really like you or it scares them really far away or they think you'r nuts!I will get back to you tonight Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted December 13, 2007 Report Share Posted December 13, 2007 Hey Ernie,Thanks for sharing. That "expert" needs a swift kick in the pants!I'm just so glad that you found someone who took the time to know you and your illness. Amy Quote Link to comment Share on other sites More sharing options...
Ernie Posted December 14, 2007 Author Report Share Posted December 14, 2007 Hi,Thank your my dear friends for your support. It means a lot to me.My niece is coming to my house on Sunday because she is being tested for NCS and POTS on Monday by my researcher. She has 4 hours of testing to do including the catecholamines. I am pretty nervous about it because she thinks she is going to throw up and faint and I am going with her. The team there is so nice to me so I am sure they will know how to take care of her. I just hope that I will be able to stay conscious myself during her whole testing.She thinks she will be able to drive home (3 hours) after the test. I told her to expect to stay at my place overnight to be safe. I don't want her to kill herself going home. Do I worry to much or what? Quote Link to comment Share on other sites More sharing options...
Sushi Posted December 14, 2007 Report Share Posted December 14, 2007 Don't think you worry too much. Nobody told me I might not want to drive after my TTT, so I went by myself. Had to sit there for hours before I could drive home. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted December 14, 2007 Report Share Posted December 14, 2007 I am sorry for all of your pain over the years. It is not fair to be treated so poorly on top of being so ill and disabled.I hope things go ok for your niece. Good thing she has you to support her through this. Quote Link to comment Share on other sites More sharing options...
Rachel Posted December 16, 2007 Report Share Posted December 16, 2007 Hi Ernie,I'm sorry you have to face yet another difficult anniversary. Thanks for sharing the struggle with us.Though I wish you didn't have need to be, I'm glad to have you here on the forum. I'm sure you're family appreciates your support as well. Thanks for all you give.Rachel Quote Link to comment Share on other sites More sharing options...
Ernie Posted December 17, 2007 Author Report Share Posted December 17, 2007 Hi,The nurse called my niece last night to cancel the test because there was a big snowstor (about 2 feet of snow) falling and the roads are not safe. So I don't know when her test will be postponed.My niece is still coming to Montreal today to see my other doctor to get referrals for my specialists. We will see how it goes. Quote Link to comment Share on other sites More sharing options...
Ernie Posted December 18, 2007 Author Report Share Posted December 18, 2007 Hi,The second appointment went well with my niece. The GP gave her a referral for an EP, an endocrinologist and a neurologist. They are all my specialist and I will fax the referrals tomorrow and see when she will get her appointments. My niece is quite happy that her trip was worth her while.Personally I got 2 referrals. One for the EP in Ottawa and one for a neurologist specializing in channelopathies. So I will also be faxing my referrals to get my appointments.It's getting exciting. Quote Link to comment Share on other sites More sharing options...
momdi Posted December 18, 2007 Report Share Posted December 18, 2007 Dear Ernie,So sorry for this awful anniversary, but I am very grateful for you. I've dropped in on this forum now and then, as my 25 year old son has POTS, and you all have been mom-savers on so many occasions. And whenever I do drop by, you are one of the strong, consistent post-ers here. Just wanted you to know how much you are appreciated.Dianne Quote Link to comment Share on other sites More sharing options...
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