Bladder research trial in north London

[Tania B]

If you have an overactive bladder (OAB) with your MS, you may be interested in a research trial at the Whittington Hospital in north London. In some people with OAB symptoms, the urine shows signs that the bladder is inflamed, and although infection is a recognised cause of such inflammation, routine tests for infection are often negative. Some research has raised doubts about the accuracy of standard tests for infection.

 

More details are shown on the attached pdf file.

Edited 25 Sep 2012, 6:15 pm by Tania B

[derby42]

thanks tanya, I can't access the file though. am I not doing it right?

[Tania B]

I've tried adding a Word file instead but I can't see either. Can anyone help?

 

How do you and can you attach a file in a post here? I've tried twice.

Nitrofurantoin Study - for the web-1.doc

Edited 25 Sep 2012, 6:14 pm by Tania B

[Tania B]

I've managed a Word file above now. The pdf file was too big!

[derby42]

thanks tanya. I would volunteer but I struggled to fill in a bladder chart recently for the nurses. it sounds very hopeful though, I'm one of those whose urine always shows no infection.

[Scully]

Thanks for posting this Tania. I managed to access the file you attached OK.

 

Scully

x

[Tania B]

derby42 - I would encourage you at least to give the research doctor (Dr Kupelian) a ring. He'll be very happy to tell you more and maybe allay your fears about filling a bladder diary.

 

Tania

[PTN]

Thanks for this Tania,

 

I've contacted them to see if I qualify. He is away until 1st October so I'll let you know what he says after that.

 

Thanks again.

[Tania B]

PTN - See what Dr K says but I see that you live in Hampshire and this is rather a long way for you to travel. Good luck!

 

TB

[Tania B]

PTN - How did you get on with your enquiry about the study?

[PTN]

Hi Tania,

 

The Dr hasn't contacted me so I rang and spoke to his secretary. She couldn't tell me anything and said if i hadn't heard by Monday 8th I should call her back. If I can't get on the course then I will try and find out what doses they are using and speak nicely to my GP and see if he will allow me to do my own trial.

[Tania B]

I've sent you a message about this PTN.

 

Cartainly, I would urge you to call again on Monday. It is not long.

[Tania B]

Did you have any luck getting hold of the doctor PTN?

[PTN]

Hi Tania,

 

I spoke with the doctor 30 mins ago and will be meeting him on Monday. I am extremely grateful to you for making us aware of this trial. I am confident that this will be the cherry on my MS cake.

 

It's worth noting that if they do not find the necessary cells in my urine test to qualify for this trial they can treat me independently so it's a win win situation for me.

[Tania B]

I'm very pleased that i have been able to help you and Dr K, the research doctor, too in finding recruits. Did he say how many potential recruits he has so far?

[Tania B]

So far four (maybe five)out of twenty potential people have been recruited for the trial. Please share the trial information with anyone who may be likely to benefit.

[PTN]

Hi Tania,

 

I met Dr K today. My urine showed 8 white blood cells but not the 10 required to take part on the clinical study (very strict). However, the fact that I have the white blood cells there and my symptoms match they are going to treat me independently of the trial which can be either through the NHS or privately. I am very pleased indeed. At last we have found out what is happening to my bladder and someone has seen what is causing me the irritation and OAB symptoms. Hurrah !!!!

[derby42]

Do you have to be able to get to London to take part?

[PTN]

I would say so. When I arrived they took a urine sample then studied it under a microscope to count the number of white blood cells. I imagine it has to be a fresh sample. If you get on the course then you need to go back once every two weeks throughout the twelve week study.

[derby42]

Ok thanks for that. Counts me out cos I'm 4 hrs away.

[Tania B]

Pleased for you PTN and sorry for you Derby42.

 

Yes urine samples must be fresh. That's true.

 

How did you find Dr K and did your meet the Prof PTN?

Edited 16 Oct 2012, 11:00 am by Tania B

[PTN]

Hi Tania,

 

Dr K was very nice, professional and helpful. I will be meeting with Prof M-L next week to start my treatment.

 

Can't believe after 8 years of GP's, Urologists, Urodynamics and even an operation it took one man 10 mins with a microscope to find the root of my problems. I'm elated and furious at the same time.

[Tania B]

Hi PTN,

 

I am so glad to have helped. It may still be a slow journey but the Prof will certainly do his best to help and has had years of experience.

 

I empathise about the long journey to find some solution, but don't expect miracles.

 

T

[PTN]

Thanks Tania,

 

I understand what you're saying but I am very optimistic as I have had many short 5 day courses of antibiotics which have cleared the symptoms for them only to return after stopping the course. Dr K said they will flood my bladder and lower urinary tract with the antibiotic for a prolonged period which should eradicate it and can be repeated until it does.

 

Anyway fingers crossed.

[Tania B]

PTN,

 

Yes, I know all about the returning symptoms.

 

You'll be in good hands.

 

T