November 6, 2013 at 9:41 pm #608
Hi Everyone! I have a question for those of you on IV saline. Do you show symptoms of interstitial cystitis? (it makes you feel like you have an almost constant bladder infection, but you don’t!). It’s fairly common with us, but I’m trying to decide if there is one unifying cause (and therefore treatment!) for this… Thanks so much! 😉November 6, 2013 at 10:17 pm #4574
Not sure if this helps but….No IV, but diagnosed with interstitial cystitis about a decade ago.November 6, 2013 at 10:51 pm #4575
Not sure if this helps but….No IV, but diagnosed with interstitial cystitis about a decade ago.
This still helps, MJ! Do you have low BP, or has anyone (including you!) ever suspected your blood volume is low? Thanks, Hon…November 7, 2013 at 10:59 am #4578
I saw a specialist (urologist) and he felt I had interstitial cystitis. However, I did not go through with the procedure for confirmation. I’m sure you can understand why! It sounded very painful. This was in 1999, when I was still able to work sometimes.
The electrophysiologist that recently diagnosed me (2013) with Vasovagal syncope and an increased intrinsic heart rate did mention that I could have low blood volume. I do not have low BP. I am like you – I have high blood pressure on standing (which accompanies my POTS). I did not get an official pots diagnosis because I had a really great day when I had the autonomic testing. In fact I felt so great I thought I would’ve tested negative for everything, but tested positive for VVS and IIHR.
Also, I have struggled with anemia I believe for at least two decades. I recall my RBC or WBC being a bit off and my blood work a few years ago. My ESR was high around the time I was diagnosed with interstitial cystitis – is this relevant? If there’s anything you want me to look up in my blood work let me know that I can do that.November 11, 2013 at 4:36 pm #4584
I feel like a kid in a candy store, MJ! 😉 Did they check your renin/aldosterone levels? This usually involves taking both a little bit of urine and a little bit of blood. They may have run renin and/or aldosterone separately, but usually put it together in one test.Thanks so much! Oh, and not wanting the “official diagnosis” of IC? I’m with you there! Gads. My feeling is that if the patient feels like he/she has a bladder infection (but doesn’t) and perhaps has some urgency or fear of leaking, often with pelvic achiness, it doesn’t really matter if we have the ‘official diagnosis’. We have a pelvic pain syndrome. Good enough diagnosis for me! If Hunner’s ulcers develop, I take it all back, but it sounds like most of us don’t evolve to that point (fingers crossed). Thanks, MJ! 😉November 11, 2013 at 8:17 pm #4586
Okay Dr. D. Just give me some time… I am in a flareup with my neck. I am sure you know what that’s like! Now I have a hundred things to do! I will call my doctors office and get the info, as it was from 1999 LOL. Please remind me if I forget!November 14, 2013 at 7:08 pm #4594
Okay Dr. D. Just give me some time… I am in a flareup with my neck. I am sure you know what that’s like! Now I have a hundred things to do! I will call my doctors office and get the info, as it was from 1999 LOL. Please remind me if I forget!
I’m so sorry to hear about your flare, MJ. You now I understand! Take your time, but it’ll be interesting to see who forgets first! 🙂
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