Urodynamics test done, Botulinum injections today

[twist330]

Well I manged to do the urodynamics test, I was a complete mess but the nurse & Dr were very good and did all they could to put me at my ease. There were parts I did find painful, very embarrising, and several puddles,  it took about an 2 hours including talking over the results.  

They found I had both severe stress and severe urge incontence . So I asked the question "is this connected to the neurological problems I have been experiencing?" The Dr answer was if I had had a stroke, parkinson disease, MS, he would say yes. As I do not have a Dx( only possible RSD as a working DX) I would need to speak to the neurologist about it, as he knows nothing about RSD.

I  have been put on Detrusitol XL 4mg one a day and will here from the continence nurse to arrange physio shortly. He wants to get the Urge IC undercontrol and then maybe consider surgery for the stress IC in the meantime, give up caffeine, lose weight & Physio.

Then later in the day I get a call if I can come in to have botulinum injections in my leg to releve the dystonia in my foot. So later today that is where I will be.

I would be interested in what physio would involve & also if anyon takes Detrusitol XL
Thanks
Twist

[twist330]

Thanks I will look through them.

Twist

[twopack]

Quix wrote about her experience with bladder PT.  It's in the Health Pages about incontinence (Parts two and three).

Let me know if you can't locate them and I'll have another look.  I referenced them for someone else recently.

I hope something works to save you from surgery.
Mary

[twist330]

Well I have been on the meds for  just a couple of days and so far there is no  sign of improvement but I guess it is early days, the Dr said that if it hasn't made a difference in 2 weeks it is not going to.

I had the Botox injections in the webbing part of the top of my foot the neuro said beacause of where he was injecting it would be painful. It was not! He starts with a low dose that he is going to build up and next time he will probable do one in the back of my calf. he said that it will take 2 weeks to get the best effect. I have to have them every 3 months. I have the same injectios round my eye for blespharospasm and I have those every 2 months.

So far they have relax my toes they feel a bit like jelly. I will keep you updated.

I have one lesion in the brain, I am going to have my spine MRI'd after Christmas.

The next thing on the list is a sleep study for sleep apnea on Dec 16th.

Thankfully we have a wonderful holiday booked just days after christmas when we fly to orlando and then join a cruise ship to go around the Caribbean the special thing is my daughter works onboard the Disney magic! I keep focusing on this, to get me through.

best wishes
Twist

[sllowe]

Hi Twist!

Have you noticed any improvement since taking the med?

And, I would love to hear how or if the botox went for the dystonia.

Remind me/us if if you have spine lesions.....

[summerluvr]

He I have had the opposite problem, Retention!  I just wanted to post because not everything that seems like it could be from MS is!

I was seeing  urologist before I was finally diagnosed not MS (with multiple myeloma).  He really believed i had something more like MS going on and sent me to neuro, who could not find anything he continued to keep me on as a patient.   In the end my problems with my bladder turned out to be likely related  herpes virus (As per my urologist, the most common cause of bladder retention in younger women is herpes virus, next is something nuerolgical like MS).    

The Herpes virus attacks the nerve as it is stored in your spinal nerves and then outbreaks travel along the nerve or something.  Retention usually only happens in primary exposure.  In my case because my immune system is compromised it is happening more often.  I was exposed to the herpes virus years ago when someone drank out of my water at a party but instead of just getting a cold sore I got a systemic infection both oral/genital area, in my mouth, throat etc.  Was pretty awful. At the time they tested me for HIV etc as it was a type of reaction immune compromised people get. Well if we knew then I had cancer it would have made more sense!  So now it seems my body still has a hard time with this virus!  Just had a flair up of the bladder retention issues.  funny thing is I don't really get herpes outbreaks. But now I'm back on preventitive treatment (famvir) so hope it gets better.

[anon07072023]

Well, at least that's over with now.

For the physio, I'd have to guess they'll probably teach you the correct way to do kegel exercises to help you strengthen you pelvic floor muscles related to your stress incontinence.  

-Kelly

[twist330]

bump