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I have been suffering for about ten years and have been through all the testing and medications. My main problem seems to be PFD. I have an appointment at Johns Hopkins next week with Dr Tola Fashokun, who seems to be top in the field. Im torn on whether to take on the expense of driving from detroit to baltimore and staying overnight for a consult with this dr. Has anyone ever traveled to hopkins or mayo or any other place and gotten any good results or answers? Any input is appreciated. Thank you/.
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Think of it as a "consultation". Prepare ahead of time and ask as many questions as you want. Type up your history and the things you have tried and type up your questions and make sure they are all answered. World experts can greatly help you in a tough case. They can give you answers that may help you for years to come! -
Thank you for your reply. I think I am going to do it and I have a LONG list of questions ready. I have high hopes for this. Thanks againComment
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Good luck!Frances
Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.
Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)
Other conditions: Migraines, allergies, mild IBS.
"If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)Comment
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I think even if they can't helpgoing there may at least help you come to peace with this a little more. If you decide to go let us know how it went. I wish you the best of luck and am sorry you've suffered with this for so many years.Diagnosed w/ IC 12/2010. 3 small kidney stones removed in May of 2011.
Currently taking: Elmiron (3 times a day-pour capsule into about 4 oz. of water and drink it down (with a little food on my stomach first), Valium (an eighth to a fourth of a pill as needed (rarely need this anymore), and Curelle Probiotics -one a day in the morning on an empty stomach.
Tried: Urelle, Prelief, Oxybutynin, Urogesic Blue, antihistamines, nuerotin, flomax, vesicare, enablex, cystoprotek, prozac, quercetin w/ bromelaine, marshmellow root tea, garlic pills, fish oil, magnesium, Vitamin D-3, Boron, B-12 w/ Folic Acid drops. Homeopathic allergy shots for food and inhalents.
**Elmiron and Culturelle Probiotic have helped me get a better quality of life. I've been on the Elmiron for 6 months so far and am feeling so much better and can eat and drink so much more!
**I love the ICN - it has been a blessing in the midst of this evil curse!!!
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Lowell Parsons
Can you come and see Dr
Lowell Parsons here in California? he is the best and he has 25 yrs experience to back that IC up I really trust him good luckBlessings,
RuthComment
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HI Ruth, could you tell me about your doctor , and what meds, you use. Please could you tell me your symptoms. Thanks so much, Helen
[email protected].
Im running out of pain meds, taking Lyrica, oycontin, ambien and lorezepan.Ive had instills 6 yrs ago,I dont want to go the same path again as I feel I started vulverdynia, after self catheters.Im worse sitting, I feel better lying down. My pain moves,from my back to pelvc floor to bladder to my clitoris. I am going to see a pudendal nerve specialist next month,
HELEN XComment
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