Guest guest Posted February 25, 2007 Report Share Posted February 25, 2007 Hi Rose, Yes my name is ;o) If I have good support ? The support of my friends and family can vary according to the different persons. My girlfriend is often very supportiv, but sometimes she thinks that everything is concerned about my disease, and I think she´s wrong about that. We have been together for 7 ½ year and have a 3 ½ year old son. The ones whom is most supportive are my brothers girlfriend ( maybe because she almost knows what í´m going through - her mother has cancer in her throat and tongue - and she herself has a tumour in her brain ( not cancer )) and some colleagues at work. So yes, I´m able to work - but is very depeding of how much I sleep at night ( for now it´s about 3-4 hours a day, and it´s including a sleeping pill ). But luckily I´m able to work from home, I can connect with our system by the Internet ( Citrix ). No I´m absolute not comfortable with my doctors here in Denmark, when i´m talking to them it feels like i´m talking to a wall. So for that reason I have been in contact with Om Sharma to hear if he knew anyone here in Denmark or the rest of Scandinavia who knows something more about Neurosarc. I didn´t assume to hear from him because I just were a danish guy who spontaneous wrote to him, but he did answer me. Here a copy of his mail : " Dear Mr Huus; I am not sure if I know anyone interested in neurosarcoidosis in Denmark. Perhaps the best thing for you is to get in touch with Professor Marjolein Drent in Masstricht, Nehterlands. She has a good knowledge of neurosarcoidosis and is the best in Europein her speciality. I know her well. Her email is mdr@...>. Should you have any difficulty then give her a call ; telephone number is 31-43-3877043 and Fax is 31-43-3875051. Tell her that I referred you to her and give her my best regards. Best wishes, Om Sharma, FRCP " I have written to Marjolein and she wrote the following back to me: " Dear mr. Huus, It is certainly possible to visit our outpatient clinic. Do you think your ensurance company will allow you that? I will send you a book about neurosarcoidosis by mail. If you wish to visit our outpatient clinic I suggest you stay a few days so we can work out your cae approriate, please let me know what you think of this. kind regards, Marjolein Drent MD PhD, Pulmonary Physician Professor of Interstitial Lung Diseases (ILD) Department of Respiratory Medicine Sarcoidosis Management Team University Hospital Maastricht PO Box 5800 6202 AZ Maastricht The Netherlands " I have written back to her asken if she knows how much a stay at the clinic will cost me - but I´m still waiting for her answer. So for the moment i´m examing the possibilities for me travelling to the Netherlands, and if I can get some financial aid so I can pay for the stay. Best regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2007 Report Share Posted February 26, 2007 , I guess some support is better than none. We have a member in the Netherlands; I've listed where she receives treatment, which sounds like the same hospital. I believe that she has a lot of confidence in her medical team. They do research there also. I don't know anything about the health care system in Denmark, but I remember several years ago we had a member in Canada who was sent to a NS specialist in the U.S. because there wasn't anyone in her area who could treat her. Perhaps you can appeal to whoever decides these things, and get your expenses paid. It's probably worth a try. Let us know how things are going with you. Academic Medical Centre andUnivercity AZM in Maastricht (The Netherlands) Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: My story..aDate: Sun, 25 Feb 2007 09:25:35 -0000 Hi Rose, Yes my name is ;o) If I have good support ? The support of my friends and family can vary according to the different persons. My girlfriend is often very supportiv, but sometimes she thinks that everything is concerned about my disease, and I think she´s wrong about that. We have been together for 7 ½ year and have a 3 ½ year old son. The ones whom is most supportive are my brothers girlfriend ( maybe because she almost knows what í´m going through - her mother has cancer in her throat and tongue - and she herself has a tumour in her brain ( not cancer )) and some colleagues at work.So yes, I´m able to work - but is very depeding of how much I sleep at night ( for now it´s about 3-4 hours a day, and it´s including a sleeping pill ). But luckily I´m able to work from home, I can connect with our system by the Internet ( Citrix ).No I´m absolute not comfortable with my doctors here in Denmark, when i´m talking to them it feels like i´m talking to a wall. So for that reason I have been in contact with Om Sharma to hear if he knew anyone here in Denmark or the rest of Scandinavia who knows something more about Neurosarc. I didn´t assume to hear from him because I just were a danish guy who spontaneous wrote to him, but he did answer me. Here a copy of his mail : "Dear Mr Huus;I am not sure if I know anyone interested in neurosarcoidosis in Denmark. Perhaps the best thing for you is to get in touch with Professor Marjolein Drent in Masstricht, Nehterlands. She has a good knowledge of neurosarcoidosis and is the best in Europein her speciality. I know her well. Her email is <mdr@....nl>. Should you have any difficulty then give her a call ; telephone number is 31-43-3877043 and Fax is 31-43-3875051. Tell her that I referred you to her and give her my best regards.Best wishes,Om Sharma, FRCP"I have written to Marjolein and she wrote the following back to me: "Dear mr. Huus,It is certainly possible to visit our outpatient clinic.Do you think your ensurance company will allow you that?I will send you a book about neurosarcoidosis by mail.If you wish to visit our outpatient clinic I suggest you stay a few days so we can work out your cae approriate,please let me know what you think of this.kind regards,Marjolein Drent MD PhD, Pulmonary PhysicianProfessor of Interstitial Lung Diseases (ILD)Department of Respiratory MedicineSarcoidosis Management TeamUniversity Hospital MaastrichtPO Box 58006202 AZ MaastrichtThe Netherlands"I have written back to her asken if she knows how much a stay at the clinic will cost me - but I´m still waiting for her answer.So for the moment i´m examing the possibilities for me travelling to the Netherlands, and if I can get some financial aid so I can pay for the stay. Best regards, Mortgage rates as low as 4.625% - Refinance $150,000 loan for $579 a month. Intro*Terms Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2007 Report Share Posted February 26, 2007 , One of our members that lives in Kuwait was able to get the Majestry to send her back to the US for treatment. (At least we think she's back here by now.) Because she was unable to get the care she needed in Kuwait- they were willing to send her elsewhere, and pay for the transportation, her living quarters and her medical care. I don't know how it works in your neck of the woods-- but it may be worth a try. Take care, and I'm so very glad that Dr. Sharma was so very willing to recommend someone. That is wonderful! He is a great man. Sincerely, Tracie NS Co-owner/moderator************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
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