New have questions

[sheryl*]

[/SIZE][COLOR=Black] :loco: Hi I am new to this forum, trying to figure out how to use these smileys words are coming out instead of smileys?? But thats not my main question!!LOL I currently belong to a lupus forum that I have been a member of for about 6 or 7 months now, I stumbled on it on accident because a good number of my symptoms kept popping up up with lupus, and I had a positve ana. But now negative. I dont know where to start, I guess just list my symptoms, lowback pain knee pain, numbness in extremities, have had ongoing fever averaging around 99.6 to a hundred over a year now with now real reson why. Only tests coming out positve at this time are elvated c-reactive protien at 5.0, guessing that is not that high. I had whole antiphosolipd panel done everything there was ok except it did say on part that dvt was borderline, but docs are not concerned with this. I have terrible brain fog. I have a left hand tremor for about 2 yrs now, dont know why. Ihave had an MRI of brain it is fine. I have had nerve conduction tests of my hands they are fine, but I still get numbeness daily in them. And the symptom that brings me here my bladder concerns have been plagueing me for over 12 yrs now, before that it was not that bad but still there. I cant really say its that bad now as far as pain goes, unless I just have a high tolerance for pain?? But for the longest time at least 12 yrs, i have had an urgency/frequency problem, but with no pain or burning, but a definate pressure. about 9 or 10 yrs ago my gyno put me on ditropan, made matters worse, I allready feel like I cannot empty my bladder as it is, and the ditropan made it worse. Since I really was not having any pain I just ignored it for the next 8 or so years, just dealing with going alot, as long as it wasnt painful. But due to sleep deprivation from getting up no less than 10 times a night, I decided to get a referral to a urologist, he tryed me on detrol, same thing made matters worse, tryed oxybutrin, same thing worse. I am now going in for my 4th DMSO treatment thursday. I see no improvemnt but its not worse, with the exception of after the first intial void of holding it in for two hours, i get a terrible cramping feeling int he lower pelvic region, but after an hour it subsides and I am ok. Preleif does help some, thats what now leads urologist to think I do have IC, I agree i think, I notice I cannot tolerate anything with tomatoes, or citrus which are big culprits. But I cannot give my one maybe two cups of coffee a day I cant :bonk: I hope these are coming out as smileys not words!!! He did do a cystscopy, not where they put you under, just checking on my incontinence level, which he said was mild to moderate, and suggested keggels. Ok thats fine I can do that, but my biggest issue is lack of sleep to to getting up all night. What is making it hard for him to really give me firm dx is that I do not exeprinece much pain or burning, except for when I am expelling the DMSO stuff. i do have a definate pressure feeling though. Also may be worth noting, sorry if this is gross but trying to explain my symptoms correctly, it feels like something is supressing my bladder from empting, as during the night sometimes I will void into a towel while standing and it appears to be easier to void or empty that way as opposed to sitting down. Anyone have any clue to why this might be, I have repeadly told all doctors of this and they are saying nothing, I told nurses last weak they just shook their heads, I do not appear to have a stricture. Urologist did say it could take all 6 treatments to see any releif. He did say next step if I saw no real realif with this would be a bladder biopsy. My questions are what would he be able to tell with the biopsy, and is there anything while hes doing that that he can do to help relieve symptoms? I guess I have procrastonated for so long on this becasue it was not painful. But as time is going by I am noticing more discomfort than I had in the past, more pressure, shooting pains sometimes, right now as a matter of fact there is a dull ache on my left side. I cant say its painful, but definalty there. Gyno say all looks fine to him in that area and his was actually the one who pushed me to get a referral to a urologist. Has anyone else experienced the pain upon expelling the dmso after that first void the day of treatment, I have had 3 treatmetns and aftr the two hrs when you are allowed to void its very painful, urologist says that not normal,. maybe a little burning but thats it, with me its terrible cramping and I am not one to get cramping to often, been lucky as to not getting that type of pain. I do know i go to the bathroom no less then 50x a day. I do not drink anything on the mornings of my DMSO treatments, so I wont have the urge to go. I have tryed drinking less water or anything in the evenings, but I like water and do drink it thorughout the day. Also another question on the DMSO, he told me along wiht that in the injection of the stuff into my bladder is lidocaine a numbing agent, heperin a blood thinner used to create a good layer of GAG(mucosy stuff he said), and kenalog a steriod. Does the steriod casue anyone to bloat, just curious, as my symptoms have come to be more noticiable and aggrivating, I have noticed bloating big time at all points throughtout the month, not just when pmsing and such, but was not sure if it was due to my symtpoms are maybe the kenalog. Ok sorry i wrote a novel, but wanted to be thoruogh on my symptoms to see if any one else has experinced anything similar to my situation. Thanks for any thoughts or replies.....Sheryl

[SharonA]

Hello Sheryl and :welcome: to the ICN...

I am like you...could not take Detrol or Ditropan because of retention. My first uro suggested both of them, one at a time. Boy...talk about dessert mouth and major retention.

I am not an expert on this subject since I do not seem to have this problem, but...have you been tested to see if you might have Pelvic Floor Dysfunction? Your pressure problems and being able to empty your bladder while standing caused me to think of this. Like I said, I really do not know much about PFD except what I have read on the boards. There are some here who do have this condition and I hope they will join in and let you know if I am wrong on this.

The pain that you have after eating citrus or tomato products might be caused by IC. Yes, these food items do cause a lot of us to experience burning in the bladder.

Urgency and frequency are both common symptoms of IC. You must have major sleep depravation with getting up 10 times a night to void. That in itself would also have caused me to go running to a uro. I thought I was bad when I would get up at the most 3 times in a night.

I guess my number one suggestion is to find a uro who will do a Cystoscopy/Hydrodistention. That way, you will be given a definite diagnosis as to having IC or not. That is the first step in getting the help you need to reduce symptoms. Just make sure the uro you chose to do this procedure knows what he/she is looking for. Most of us here have been diagnosed this way. That is what was used on me. There is also a Potassium Sensitivity Test that is a good diagnostic tool. You can find a lot of posts on both here on the boards.

I am glad you found the ICN and hope we are able to help you find answers to your questions. We understand what you are going through because we have all been where you are right now.

:) :) :)

[sheryl*]

Thanks Sharon for the welcome, you know I have not heard of pelvic floor dysfucntion, something else to research! Yes the hydrodistention will be the next step, if these dmso treatments dont work, and so far they are not. I will be sure to ask him many more questions too, thanks for the info on the postasium test too. Yep that all I got from the over active bladder meds was dry mouth and worse retention. But at least I feel like I am headed int he right direction anyways, slowy but surely starting to get more answers, not hopefully I will get some relief!! I will search around the forums, thanks again!!....Sheryl

[ICNDonna]

First of all, I'd like to say :welcome: to the IC Network. It's very possible that you have IC --- I'm sure your doctor will be doing some testing to confirm diagnosis one day soon.

As for the coffee --- if I were to tell you that your bladder would feel better if you didn't drink it, would that help? What you might do is to try to go without it for a given length of time --- say one week --- and see if you improve. Coffee can be so horribly irritating to an IC bladder. At the very least, please try a low acid coffee. There's an instant coffee (Kava) that's low acid.

Sending healing thoughts,
Donna

[Kiyoka]

welcome to the board!! I think I have lupus as well. I had my smooth muscle titer come back postive, then did it again then nothing. I been also going to a lupus site for information. The dmso when I had it done. I didn't start helping until the 5th one, but everyone is sooo different. I also have problems with overactive bladder meds. they make me sick and give me retention. If you need any help we are all here to help give support. I wish you the best if your treatments to come.

[sheryl*]

Thanks Donna and Kiyoka for the welcomes. Donna I will have to try that coffee, would it be in just a regular store like walmart? I am out of prelief, but actually have found a store that carries for what I think is a good price. Publix had it for 7.99, and my uro has coupons for a dollar off , so I usually grab a coupon while I am there. Eckrads had the preilef for 13.00. so big difference there, I would normally take 2 preleifs with the cofffee. I feel the irratabilty and the tiredness, and withdrwals form coffee would be worse to me than peeing all day.I have to outweigh the pros and cons. But will definalty try the kava. i am glad I finally joined, I am allready learning alot and getting helpful tips. Thanks you so very much I look forward learning more and checking out the rest of the forums to see what I can learn.
kiyoka I hope you get some answers too on the lupus, very frusturating wondering what the heck is going on with our bodies, and not knowing whats casuing it :headbang: Again thanks so much for the welcome!..Sheryl