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Hi Everyone. I know Dr. Parsons is a big deal in the IC community. That goes without saying. However I live currently in Hawaii and have just started rescue instills of 40,000 IU heparin, 30cc Lidocaine, 10cc sodium bicarbonate three times per week and have not yet learned how to self catheterize. I have an appointment with Parsons August 29, 2013 in San Diego but if I want to reschedule I would have to wait till past Thanksgiving. Recently I saw a doctor at Stanford and he was helpful in confirming my local doctor's feeling that I have IC/PBS but he held no specific views on what should be in a bladder cocktail or how many times a week I should do it, or any other therapies I might try and wasn't particularly concerned about the intense genital pain I suffer from that is worsening. Also, he wasn't able to explain what may be the cause and I have a more complicated picture considering I also have a centralized pain disorder called CRPS and have been taking Ketamine which is known to cause symptoms like Cystitis.
He suggested seeing Moldwin in NY but I cannot get an appointment there till November 11. Some people say this condition worsens with time and so far I have found this to be a fact.
For anyone who has seen Parsons: I am looking for a doctor that may be able to answer some of these unanswered questions and have strong opinions on what I should do to recover rather than just say "I could try this or that" or "the studies are not there" which may be true... but I want practical personal experience to guide my doctor's choices.
Still, going to see Parsons now would interrupt my treatment, cause stress, be expensive... etc. It's nice living in Hawaii except when you need to see a doctor on the mainland. Then suddenly it becomes a 5 hour + to and from airport + $400-$500 one way ticket hassle. Outside of the appointment I would probably have to spend $700-$800 to get there and make it happen, however $300 of which I might spend anyway to get to CA later in the month, so it is $400-$500 more than I would have planned to pay. In addition I don't have health insurance. However my father is helpful in funding medical expenses when they are needed.
It would be frustrating to take that trip only to be told to continue Elmiron, continue the instills etc. This is basically the advice I got at Stanford. Though as I said it was nice to have everything confirmed.
Advice is appreciated.
He suggested seeing Moldwin in NY but I cannot get an appointment there till November 11. Some people say this condition worsens with time and so far I have found this to be a fact.
For anyone who has seen Parsons: I am looking for a doctor that may be able to answer some of these unanswered questions and have strong opinions on what I should do to recover rather than just say "I could try this or that" or "the studies are not there" which may be true... but I want practical personal experience to guide my doctor's choices.
Still, going to see Parsons now would interrupt my treatment, cause stress, be expensive... etc. It's nice living in Hawaii except when you need to see a doctor on the mainland. Then suddenly it becomes a 5 hour + to and from airport + $400-$500 one way ticket hassle. Outside of the appointment I would probably have to spend $700-$800 to get there and make it happen, however $300 of which I might spend anyway to get to CA later in the month, so it is $400-$500 more than I would have planned to pay. In addition I don't have health insurance. However my father is helpful in funding medical expenses when they are needed.
It would be frustrating to take that trip only to be told to continue Elmiron, continue the instills etc. This is basically the advice I got at Stanford. Though as I said it was nice to have everything confirmed.
Advice is appreciated.
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