jonathanireland Posted November 9, 2010 Report Share Posted November 9, 2010 The specialist in Ireland was not willing to prescribe me Octreotide,I know there are people here from UK who are being Treated with Octreotide Can you please give me some information as to who is treating patients with this drug and some contact details for that person.I really need some help here no doctor in this country seems to care and all they ask me is why am I using a wheelchair for this condition. Im so frustrated about all this its ruining my life. I cant plan my furure and my friends and familty are sick of hearing about pots they dont even listen anymore lol I dont blame them. Please Please help me find some doctor who is willing to treat me.Jonathan. x Quote Link to comment Share on other sites More sharing options...
sj75 Posted November 9, 2010 Report Share Posted November 9, 2010 I could be wrong but my understanding is that prof. Mathias team in London are one of the best. Ive heard they get patients in for full autonomic testing and studies but im not sure how loong the wait is. Im not sure what it would take for you to get a referral but i guess you would have to have a gp referral. Who diagnosed you in Ireland? would they be willing to contact London?I understand Sheffield are doing some really good work with pots patients to.x Quote Link to comment Share on other sites More sharing options...
jonathanireland Posted November 9, 2010 Author Report Share Posted November 9, 2010 Thanks SJ for ur Post. I have emailed porf mathias this morning and also rang his secretary so just waiting to see if he replys to my email and what his opinion is on the use of octreotide Quote Link to comment Share on other sites More sharing options...
miranda Posted November 9, 2010 Report Share Posted November 9, 2010 Can you tell me what this drug is please , I am going to be reffered to prof mathias soon , I hear he is very good. Quote Link to comment Share on other sites More sharing options...
jonathanireland Posted November 9, 2010 Author Report Share Posted November 9, 2010 Hey Mirry, Octreotide is a Subcutaneous Injection (which means given under the skin, its painless)of a peptide which is found in the body this peptide helps other hormones to be obsorbed more easily by the body as a result the drug has a pressor effect which means it raises blood pressure and it also suppresses tachycardia and has helped many patients make a full or almost full recovery. If you need anymore information on this please do not hesitate to contact me.;-) Quote Link to comment Share on other sites More sharing options...
anna Posted November 10, 2010 Report Share Posted November 10, 2010 I am not sure if this would be possible for consultants in Ireland, but when trying to find a new Cardiologist for my daughter, I did a DR. Fosters consultant search, then I wrote or emailed any that looked like they were up for a challenge!! I found a guy near my daughters UNI and asked him if he might be able to help! He said he might and was more than happy to try and help, so fingers crossed!! Might you be able to find someone this way?! Also the waiting list to see Prof. M is sooo long daughter was referred to him over 9 months ago and we were told he has a very long waiting list, that is for sure!!! Quote Link to comment Share on other sites More sharing options...
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