Pain Clinic (Harvard-affliated) -- CPPS pts "misdiagnosed"

[gmccormack]

I went to a respected pain clinic, affiliated with Harvard. The dr was familiar with male CPPS, she immediately wanted to do a lower back MRI before prescribing anything. I was frustrated as I had gone there with a number of different studies about potential treatments and was excited to talk.

She said something though that was interesting, essentially "the reason why many men are refractory to chronic prostatitis / chronic pelvic pain syndrome treatments is that the participants in the studies actually don't have chronic prostatitis / chronic pelvic pain syndrome they have something else and have been misdiagnosed". Dr said that I may very well have it but wants to check MRI first. I don't want to spark up old debates here "do I have CPPS?." What are your thoughts on the merit of this? I know there are many syndromes that overlap chronic prostatitis / chronic pelvic pain syndrome (PBS, IC). In very large studies though surely there will be some patients that do not have CPPS, as is with any other disease that cannot be diagnosed by blood, scan, etc. It could even go the other way...studies could show better results if all men were strictly chronic prostatitis / chronic pelvic pain syndrome patients.

If she comes back with pudendal nerve I will explode...

[Jay]

Hi,

I can only tell you this ...

When I was truly doubtful, my PT recommended a variety of tests to help clear my mind. One was a MRI of the pelvis and lower lumbar spine. I took the list to my pain management doctor (head of the UoMiami pain clinic) and asked him to prescribe. He was reluctant, telling me that it would waste our already tight funds and show nothing relevant in my case.

In the end, he was right. Other than some degenerative disk disease unrelated to my chronic prostatitis / chronic pelvic pain syndrome symptoms, there was absolutely nothing. The pelvic potion of the scan was flawless, in fact, but MRI can't show muscle spasm, as he noted to me.

Could you have something show up? Sure. There are conditions which mimic chronic prostatitis / chronic pelvic pain syndrome (we have a list on the main site), and if there's a good reason to suspect one, then investigation is obviously wise. I would just avoid having her run every test on Earth unless she can explain why she's doing it. You, as the patient, do have a right to ask for that.

[gmccormack]

I agree, I tried to stymie her persistence in the MRI but it didn't work. Personally, like every other test, it will show nothing. Maybe then we can discuss some treatment options. Speaking of which, a friend of mine from the Stanford clinic started taking 2-6 mg of Sirdalud (Tizanidine, Zanaflex) and says his pain is decreased. Just another option.

[davioj]

That does make sense since sirdalud is a muscle relaxant (alpha 2 agonist) which might help with muscle spasms. However, it is associated with drops in blood pressure as well as frequent liver function abnormalities that you need to check for while taking the drug. Its mainly used for multiple sclerosis/ALS I believe.

BY the way, you attended the stanford clinic quite recently I believe and unfortunately had some relapse. Did you stay in touch with the group with whom you attended the clinic and could you comment on the perceived general outcome?

[gmccormack]

Davio

Your right about Sirdalud, I researched it as well.

I do keep in touch with many of the guys that I attended with. I don't know its appropriate I post the results, it has no statistical value and may have exceeding or negative results for the clinic. There are posted studies on the website though.

[carld]

I could be off base here...and I think Jay has stated such perfectly...but I think the road to recovery really has to start with accepting the fact you have this broad condition called UCPPS...You have a lot more info then anyone else because you have been to the clinic and I dare say some people will benefit and some won't...But in the end the biggest factor in my belief of my progress are two things...

Anxiety control
Time...

[gmccormack]

right Carl, I personally have accepted this. My curiosity is however:how many participants in these studies actually have CPPS. Obviously, in a trial of 150 men not all have it, not even this broad based CPPS. Even in these small trials going on now all over the place, with say 15 patients if only 10 of them really have chronic prostatitis / chronic pelvic pain syndrome results are going to be severely flawed.

Could it be that a significant number of patients do not have it but have been put into the category and go forth with the study, flawing results positively or negatively?

Unlike cancer, which can be verified we don't know for sure who has it and who doesn't, maybe we all can accept it as chronic prostatitis / chronic pelvic pain syndrome and treat it like that, taking personal thoughts aside. This kind of thinking has no end and invokes a lot of controversy, so I'm merely just bringing to light something I was thinking.

[carld]

These are all very valid points and should not be taken lightly ...This is a perplexing condition. Spectrum disorders are not only discouraging to sufferers, but to doctors and researchers. Since I'm not a doctor or a researcher...In my best estimation and all the research papers I have read being in this forum almost 4 years there really can't be some accurate measurable room for error in a double blinded test.. with our sub group no matter what is written in the questionnaire before a trial begins...You know??? Other than saying this is Fu#*&#! up my life I feel terrible in my pelvic region...help me...Seriously...I think your spot on...But I'm sure there is an answer or a path in the right direction and perhaps Mark can shed some light...

In the end I feel most of us with our personalities get in this mess in the first place and the irony is the same personalities can get us out mixed with time...

Good and intelligent post G...

[webslave]

My opinion is that this is mostly nonsense. There are simply no other conditions that exactly mimic the classic CP/CPPS (UCPPS) symptoms, as outlined here:
https://ucpps.men/what-is-chronic-prostatitis-CPPS

Any thorough investigation by a competent uro should result in an accurate diagnosis of the condition. Misdiagnosis is not a factor in UCPPS. There are some cases if bladder neck obstruction, abscesses and so on, but the percentages are very small.

[carld]

There are simply no other conditions that exactly mimic the classic CP/CPPS (UCPPS) symptoms

So true...My thought was the trial aspect of spectrum disorders before studies start and how is the margin of error accounted for? What are the calculations?...In the end, to me it's irrelevant based on my above post. Non the less thought provoking for me...

Best

[gmccormack]

I'll close with this...I realize that there no conditions that exactly mimic CPPS, and likely everyone on this board has it, fine, I get it. My thought was I see a lot, especially recently of these small trials 10 or 15 participants. If just 2 participants who enter the study with NON classic signs of chronic prostatitis / chronic pelvic pain syndrome the results could be heavily flawed, I acknowledge standard deviation is greater in these trials because of the size but that does not take into account someone that does not have the syndrome. In a larger trial the results are likely going to be more accurate but it's doubtful the screening process will be tight.

Carl - It may not be relevent to you, but for the future of the chronic prostatitis / chronic pelvic pain syndrome field and progression of science I think it is important that trials are accurate. It's people like us who research and press uro's and others in the medical community that will change the way this is treated and possibly have great new treatments for those that are refractory to the standard ones. Look at what Mark has done, that's one man.

[carld]

Carl - It may not be relevant to you, but for the future of the chronic prostatitis / chronic pelvic pain syndrome field and progression of science I think it is important that trials are accurate. It's people like us who research and press uro's and others in the medical community that will change the way this is treated and possibly have great new treatments for those that are refractory to the standard ones. Look at what Mark has done, that's one man.

That's true...But
Re-thinking my irrelevant comment...my point is... my experience in looking for answers that we may not ever get in this lifetime from researchers and doctors...is proving to be fruitless...Outside of a few doctors like Dr. Dimitrakov and Dr. Shoskes. The field is small comparatively to say prostate cancer research...To put it like this and I will digress...I once asked my 2nd urologist Dr. Scott Zeitlin( another good uro) at my worst why is there not a lot of research...his answer shocked me, but woke me up...I quote " Because cancer is sexy, prostatitis isn't" That's what were up against!

I have lost a lot of faith in the medical community for more reasons than my UCPPS...I got better with out them and I have yet to read from a poster that their doctor helped them recover from UCPPS!

Best