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I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
Good luck ladies I hope everyone's trials/implant procedures go perfectly!
**** Jen
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.] *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
IC & fibromyalgia since ~'77. Osteoarthritis since ~'88. Idiopathic Thrombocytopenia Purpura (autoimmune blood disease) since '96. IBS for who knows how long. Interstim implant 2/04, revised 6/06, replaced 11/12 & again in 9/17. Antibodies to thyroid since at least '92 (finally diagnosed & treated 1/06). Asthma & vocal cord dysfunction 12/06. Hypoglycemia '07. Perimenopausal at 37, menopause at 45. Pituitary & adrenal failure. Osteopenia. Grade 3 sacral fracture by S3-S4 at age 12, healed 14mm out of place.
We will all have sore butts at the same time! I will be ouot of work for a while I guess, so I can talk to you guys. Tig yours is comming right up, I hope it goes aweosome!
Erika
IC diagnosed officially via cysto/urodynamics 1/26/07
Grade II Endometriosis diagnosed via lap 12/11/07
"Fall down seven times, Stand up eight."
"Life is a tragedy for those who feel and a comedy for those who think."
Current Treatments:
Interstim Since 5/25/07!
Birth Control
Well good luck on your trial , I hope things go good for you as well..
I will be thinking of you tomorrow morning!!!
Also I am still waiting for my call but I was told it was with in a couple of weeks so would it be funny if we get done on the same day...
I sure will let you know when my surgery is soon !!!
Warm hugs coming to you ; Debbie
Thinking positive has got me through to another day!!
I'll be thinking of you! I hope it goes well. I'm so excited to hear~! My doctor thinks I will be fine to go back to work on Monday, my trial is on a friday...lets hope.
Erika
IC diagnosed officially via cysto/urodynamics 1/26/07
Grade II Endometriosis diagnosed via lap 12/11/07
"Fall down seven times, Stand up eight."
"Life is a tragedy for those who feel and a comedy for those who think."
Current Treatments:
Interstim Since 5/25/07!
Birth Control
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Well I just got the phone call for my surgery to replaced my pacemaker unit it is May 29...
I am so happy to hear this news, I only been waiting like six months ...
So I guess everyone else will have their surgery before me ...
Yea Sharon I can't wait for my butt to buzz big time now , LOL
Thinking positive has got me through to another day!!
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