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Between a rock and a bit of a hard place (Read 4845 times)
texan1960
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Between a rock and a bit of a hard place
06/10/11 at 11:33:57
 
I am not a shocker, more of leaker who sometimes feels like they may seize/pass out.  I also have severe allergies/asthma. I have been taking allergy shots for many years and they really do help the  allergies.  My problem, is they make me feel like I have achy flu symptoms, muscle twitching, and exhaustion for a day.  I am torn, because if I go off them, and the allergies flare, so do all my symptoms, including IC.  If I stay on them, I have a day of punyness.  So....not sure what to do.  I am wondering if taking an extra anthist when I get the shot might help...errrg.  I am afraid if I tell the allergist, he may freak and take me off of them Undecided
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Riverwn
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Re: Between a rock and a bit of a hard place
Reply #1 - 06/10/11 at 11:52:13
 
I would say. take an extra antihistamine and DEFINTELY tell your allergist about this. he might be able to go at a slower rate or give you a weaker solution while getting you over allergies. He should know, for sure. I hope you feel better soon!
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Ramona
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texan1960
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Re: Between a rock and a bit of a hard place
Reply #2 - 06/10/11 at 12:02:41
 
Thanks Ramona I will try that and I will tell him on my next visit.  I feel like I walk such a fine line all the time.  But, I guess we all do.  I am glad the allergy shots do help control the allergies.  When I started them, I had hoped maybe all the other stuff would go away with control of the allergies, but not so unfortunately.  But, at least they keep one set of problems under check.  If I can get this one issue under better control, I will consider them a success.  He did tell me that I should likely be on them once per week for the rest of my life, so I kinda need to get this one figured out.
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Riverwn
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Re: Between a rock and a bit of a hard place
Reply #3 - 06/10/11 at 12:17:09
 
Youre welcome Hon, and remember to never feel guilty if you are already feeling bad and put off the visit for a week... He will understand why once you explain it Smiley  You dont want one of those when you are already reacting ok??
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Ramona
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texan1960
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Re: Between a rock and a bit of a hard place
Reply #4 - 06/10/11 at 12:29:28
 
Thanks, yes I do often cheat on the not going every week, have been chastised by shot room nurse haha!  I noticed we have the common joy of IC.  Is yours under decent control? Mine went haywire about a year ago (when I tried to go down to just bcp and a zyrtec a day).  I have really been able to get stablized with Sanctura and Flomax (Elmiron flunkee)...
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Riverwn
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Re: Between a rock and a bit of a hard place
Reply #5 - 06/10/11 at 15:02:18
 
Its so much better now! I take Vistaril and Ditropan twice a day and Im down to maybe 2 bladder spasms a day instead of 30 to 40 as I was before! The Ditropan alone wasnt enough. Hope things go better for you Smiley
Ramona
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texan1960
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Re: Between a rock and a bit of a hard place
Reply #6 - 06/11/11 at 10:07:39
 
Haha well when the 95 degree weather and 95 percent humidity is over with that may help the overall body ache too.  What did they do to diagnose you with IC?  Mine was 10 years ago when they still did the test to put you under and stretched your bladder to look for wall damage.  I also flunked the potassium sensitivity test.  That one hurt so bad, I almost came off the examination room table.  My poor urologist looked like he was going to pass out...so I am thinking whatever tests they end up doing on me probably won't be too much worse than that...at least I hope not (only a blood tryptase so far). Guess I received two pretty bad failing grades on those. They may not even do those IC tests anymore....I know they were looking for markers to just enable a urine test...wow that would have been ever so much more pleasant.
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Riverwn
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Re: Between a rock and a bit of a hard place
Reply #7 - 06/11/11 at 10:14:45
 
I wont go through those tests, Im afraid it would make me go into shock.  Mine was basically feeling as if I had chronis UTIs (which I do but it wasnt true at that time) but the labs would come back, no bacteria but maybe slight blood because of the spasms (I didnt have a kidney stone). Its been like that for years and I finally have some relief with the meds Smiley
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texan1960
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Re: Between a rock and a bit of a hard place
Reply #8 - 06/11/11 at 10:29:36
 
Thank goodness they didn't make you go through the tests, both from the shocking standpoint and plus, honestly, they were really not wonderful experiences for me.  I am glad the ditropan and vistaril are working for you...the main thing is to keep the bladder stable, which it sounds like you are doing. Have used both in the past and was pretty happy with them at the time.
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Lisa
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Re: Between a rock and a bit of a hard place
Reply #9 - 06/11/11 at 13:17:18
 
My IC was diagnosed by biopsy.  I had chronic inflammation seen in the biopsies and raised levels of mast cells.   The urologist had told me, You have nothing to worry about, all looks perfectly normal.  He and my nephrologist were absolutely shocked with the immunohistochemical and pathology reports!!!  

They say, however, that US doctors don't like to biopsy the bladder.  So, the result is not really a true picture of the cellular activity going on in there.  In Europe they will biopsy not only the mucus membranes but also the detrusor muscle and this is where the diagnosis of Detrusor Mastocytosis comes from.  

If you are working with a urologist, these other tests may be totally uncalled for in that they won't truly diagnose the disease without doing biopsies.   You should insist on biopsies.   It may or may not open up treatment options, but at least you have a definite situation which is known.


Lisa
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Don´t forget, there is so much more to life than being sick!
 
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