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Research offered me hope then help


denabob
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I've been ill for two years now and through many doctors and testing. I found my current doctor at WVU physicians office center in Morgantown WV. His name is Dr. Robert Hoeldtke ( pronounced holdkey) he is researching the benefits of Octreotide either alone or in combo with Midrodine. I have completed testing and found it very helpful to me! I know ful-well the frustration that comes with this illness. I'm a single mom of 2 and before my illness I was a letter carrier for the US Postal Service. Of course as many of you know that's no longer possible! I went from walking 10 miles a day 5 days a week to being lucky to grocery shop without help! Finally thanks to my doctor's dedication and this new med. I have at least 2 good weeks a month. I'm still considered disable by the gov. but if I can take care of my children without as much difficulty then I'll take what I can get! I hope this info is helpful to others who like me have prayed for some relief for a long time. My doctor gave me the o.k to give his name because he needs the drug company to see the benefits of this drug on this condition. For me it's nice to have the ability to feel normal (not just o.k) some of the time. Even though there is no cure , some relief from symptoms makes it easier to cope with this illness.

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Denabob, I'm so happy for you! What specialty is Dr. Hoeldtke? What test results did you bring with you to show him? How far did you have to travel, and how did you get there? Was this an experimental drug, the Ocreotide?

Thanks for the information.

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That is very interesting information!! I live in WV and had looked into going to see Dr. Hoeldtke, but when I called his office to ask some questions, I found the staff to be rude and unhelpful- what has your experience been with him other than the treatment? How is his bedside manner? It's nice to hear from someone who has had a good experience at WVU- I've talked to a few who weren't too impressed. I'm so glad for you that you are feeling better, though!! I am also a mom, although not a single mom, I am home with the baby 24/7 and his dad works long hours and goes to school, so I take a lot of the burden on myself in caring for him- and there are days when it is just so hard!! I commend you for hanging in there!! Best of luck to you ;)

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I have recently started taking this drug and it seems to be of some help. It is difficult to give you dosages, etc, because the dose must be titrated to your needs and reactions. I was flabbergasted when I picked up the 3-month supply and the price was about $6,000. And, that is for doses in varying strenghts. The stronger the dose, the more costly. This process involves monthly injections done at a doctor's office and injections you can do at home on a daily basis.

I hope that this information is useful to you all.

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I'm sorry it has taken me so long to respond! I'll answer as many questions as I can. Dr. Hoeldtke (in my experience) has a fabulous bedside manner, he understands the frustration of our illness. In order to contact him you can call his office at (304)598-4800 if the receptionist is rude make sure to mention it to him directly She answers for more than one Dr.! You can also call his secretary directly to ask about research at (304) 293-4125 ( tell them Deanna sent you :) )I agree that octreotide is more expensive than gold but to me it is more valuable than gold will ever be and I'm one of the lucky ones whose insurance actually pays for it! It is not an experimental drug but it is not linked to our condition yet ( that's the objective of the research) I traveled 270 miles round trip and the research reimbursed me for my mileage and hotel costs were paid as long as I was under research protocol.Dr Hoeldtke is an endodronolgy/ metabolism expert.The cardiologist that I was seeing refered me to him when it became obvious that I was "refractory to therapy" I provided him with my tilt table test results and the rest was done by him.I have benefited greatly from this treatment and hope this info helps someone else to also!!! Thank you for your interest and kind words!

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