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Hi everyone,
I'm newly diagnosed and have been reading a lot of information. I had a series of "bladder infections" last fall and it has taken about 9 months to get a correct diagnosis.
I feel like I've been through it all. Very thorough physical exam, next came urodynamics testing, next a brain & spine MRI to rule out MS, then a second opinion who didn't even examine me and said it was just my "personality" and if I just stopped drinking caffeine the frequency & retention would magically disappear (my favorite line from him, "our bladders reflect our personalities"), then more "infections" which took me back to my original uro and led to hydro with instillation and a urethral dilation. I am finally comfortable with my Doc and think she's really good. Early in the process I saw her Nurse Prac and loved her, but wasn't as confident in her care. I was relieved to see my Doc on the ICNetwork list of providers! Yay!
Anyway, a symptom that I thought all this time was unrelated, my uro said probably is related and now I'm shocked and wondering how many others have it too! It's foot and leg pain. Almost every day my feet hurt very badly when I step down (especially the bottom of my left foot). At first, my family Doc thought it was Plantars Fascitis, but when she examined my feet, I didn't even flinch which she throught was strange. Sometimes it feels like my feet are so very swollen, but if I look down, they look normal! My legs ache too and I get all stiff if I sit, but it's not as sharp as the foot pain. I also get random pain in my glutes, hips and lower back. My uro said that because the sacral nerve system controls the lower body, including the bladder, it could all be related and the pain is nerve pain rather than muscle pain.
I am taking Gabapentin 100 mg 3x per day and it really helps, but is not totally fixing the pain. I still need ibprofen if I'm going to shop or do anything other than lay on the couch. It's still a life saver b/c I can walk without harsh pain - it's pain I can handle, but it's not a cure.
I have only had the diagnosis for 2 weeks and have had 2 RIMSO-50 instillations so far... 4 more to go. It hasn't been too bad (smell is minimal, pain of catheter is also minimal or none when the Doc did it), but I have had what I feel are like medium sized flares as a result.
I am ordering the "Survival Guide" book and hope to educate myself about diet here in the next week. Thanks to everyone who is responsible for this network! What a blessing.
Kim
I'm newly diagnosed and have been reading a lot of information. I had a series of "bladder infections" last fall and it has taken about 9 months to get a correct diagnosis.
I feel like I've been through it all. Very thorough physical exam, next came urodynamics testing, next a brain & spine MRI to rule out MS, then a second opinion who didn't even examine me and said it was just my "personality" and if I just stopped drinking caffeine the frequency & retention would magically disappear (my favorite line from him, "our bladders reflect our personalities"), then more "infections" which took me back to my original uro and led to hydro with instillation and a urethral dilation. I am finally comfortable with my Doc and think she's really good. Early in the process I saw her Nurse Prac and loved her, but wasn't as confident in her care. I was relieved to see my Doc on the ICNetwork list of providers! Yay!
Anyway, a symptom that I thought all this time was unrelated, my uro said probably is related and now I'm shocked and wondering how many others have it too! It's foot and leg pain. Almost every day my feet hurt very badly when I step down (especially the bottom of my left foot). At first, my family Doc thought it was Plantars Fascitis, but when she examined my feet, I didn't even flinch which she throught was strange. Sometimes it feels like my feet are so very swollen, but if I look down, they look normal! My legs ache too and I get all stiff if I sit, but it's not as sharp as the foot pain. I also get random pain in my glutes, hips and lower back. My uro said that because the sacral nerve system controls the lower body, including the bladder, it could all be related and the pain is nerve pain rather than muscle pain.
I am taking Gabapentin 100 mg 3x per day and it really helps, but is not totally fixing the pain. I still need ibprofen if I'm going to shop or do anything other than lay on the couch. It's still a life saver b/c I can walk without harsh pain - it's pain I can handle, but it's not a cure.
I have only had the diagnosis for 2 weeks and have had 2 RIMSO-50 instillations so far... 4 more to go. It hasn't been too bad (smell is minimal, pain of catheter is also minimal or none when the Doc did it), but I have had what I feel are like medium sized flares as a result.
I am ordering the "Survival Guide" book and hope to educate myself about diet here in the next week. Thanks to everyone who is responsible for this network! What a blessing.
Kim
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