September Chit/Chat

[Virginia]

I hope Jeanie has a good trip home tomorrow. I use to enjoy taking trips by myself, out on the highway just going at my own pace. I hope she does enjoy all of this trip. Maybe she will have some fun stories to tell us when she gets back.

[Virginia]

I have something going on that I have not mentioned here before. I have to get up at night to go to the bathroom every two hours most of the time. Sometime it is every 1 3/4 hours and sometime every 2 1/4, however I can count on it being about every two hours. This has been ruining my sleep and leaving me very tired for several years.

I was told probably 10 to 15 years ago (before I started having to get up at night) that I had a problem with a valve. I went back to the Uro/Gyn two years ago and told her about having to get up during the night. She says she doesn't think I have a problem with the bladder. She thinks it is that valve.

Yesterday I left home about 3PM and I didn't get groceries put away and clothes changed until after 7PM, yet I did not have to go to the bathroom one time during that period. I had water with my dinner and still continued to grocery shop for an hour and come home, make a couple of trips in from the car, put the groceries away and didn't even think about going. It must have been at least 7:30 to 7:45. I can often do this during the day, but there is something about laying down that triggers whatever valve it is to start giving problems. I have another appointment to see the Doctor about this in October, but I don't know what good it does. This is a big problem because I need the sleep and rest. I do not want any surgery and I don't want the pills that dry you up, especially since I don't have that problem during the day. Not sure what the answer is or even if there is an answer.

[Sunshine]

Your kidneys output large amounts of urine at night, so you will have to pee more. But every 2 hours seems like a lot.

Do you drink lots water during the day, like 8-10 oz every hour? You want to drink plenty during the day for many reasons, but also to flush teh bladder so urine doesnt fester and grow bacteria.

Might she be talking about the muscle at the bottom of the bladder? Might the top of the bladder muscle be working well, but the bottom one opens and shuts unreliably?

That’s my problem. Urotraxol seems to have finally helped this problem. Its a smooth muscle relaxer that opens up the bottom of the bladder so I can pee during day (I was only peeing well at night, like you). Its common in MS. Its a type of neurogenic bladder called Detruser-Extruser Dyssenergia or something like that.

[Virginia]

Thanks for the info Sunshine. I will copy this and take it in when I go. She has just always said valve so I don't know if she means muscle or not. I go during the day, but it is just normal amount, not so often like at night.

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

Virginia ~

I found this, which explains Detruser-Extruser Dyssenergia :

Only registered and activated users can see links., Click Here To Register...

Perhaps your doctor will offer you Urotraxol, like Sunshine is taking.

I'm so sorry that you're going through this.

Love & Light,



Rose

[Virginia]

Thank you Rose. I am going to print this out. It might help her to understand what I am asking about.

[Jeanie Z]

Reunion adventure

:) I am home safe and sound. In all I drove 780 miles. The hotel gave me the wrong directions to the reunion restaurant. I got very lost and a nice young black cop stopped to help me. He even blocked traffic so I could make a u turn and go the other way with his great directions.

About 35 showed up and we had a great time visiting. My friend Tricia insisted on paying my bill which was very nice of her. Two classmates I had not seen since 1959.

On Sunday my sister in law came to the hotel. Her hair was so thin and long and straight that you could see her scalp. She had on an oversized t shirt that was soiled and baggy jeans and some awful shoes. She is very pale and her balance is bad.

We drove the 30 miles but the restaurant had moved. I called my brother and he told me to stay where I was and he would come get us. We had seen every part of St. Augustine. Years ago we stayed in Vilano Beach and went into ST. Augustine often. It is bad now with every street one way and some blocked off and tourists everywhere.

My sister in law was panicky she hated the narrow streets and yelled stop sign or red light every time. The menu changed and the food was not great as it used to be. I was glad to see everyone. I got to Jim's and Carla came home and got Lacy for me. We are now home and I am about to get in PJ's and relax.

On Saturday when loading the van I fell and bruised my broken leg. It hurt all weekend and I tried not to step on it much. Luckily my neighbor came over and helped me up and to finish loading. Jim topped off my tank.
In all it was a successful trip. The cruise control worked wonderful. I put it on 75 and stayed in the middle lane as now there are three lanes all the way from Fort Pierce to Jacksonville. Jeanie :)

[stillstANNding]

Thank you for taking the time to post, Jeanie. We have all been wondering about you. I was worried.

You are (underlined) amazing.

ANN

[Virginia]

That is something else Jeanie - driving that far and visiting with so many! Just glad you had such a good time. I hope your ankle is not damaged. We have all been wondering about you and hoping that things would go well.

Thanks for taking the time to post before going to bed.

[Earth Mother 2 Angels]

((((((Jeanie)))))) ~

Welcome Back! So glad you didn't have any traveling problems, other getting lost and the restaurant being moved.

Thirty-five is a good turnout. I am happy for you that you enjoyed visiting with your classmates and family.

I applaud you for having the energy and spunk to tackle this adventure. There is no way that I could drive 780 miles, especially on freeways and thoroughfares. You are remarkable.

Put some witch hazel on your injured leg. It will help ease the pain and swelling.

Hope you rest and sleep well tonight.

Love & Light,



Rose

[Lazarus]

Your kidneys output large amounts of urine at night, so you will have to pee more. But every 2 hours seems like a lot.

Do you drink lots water during the day, like 8-10 oz every hour? You want to drink plenty during the day for many reasons, but also to flush teh bladder so urine doesnt fester and grow bacteria.

Might she be talking about the muscle at the bottom of the bladder? Might the top of the bladder muscle be working well, but the bottom one opens and shuts unreliably?

That’s my problem. Urotraxol seems to have finally helped this problem. Its a smooth muscle relaxer that opens up the bottom of the bladder so I can pee during day (I was only peeing well at night, like you). Its common in MS. Its a type of neurogenic bladder called Detruser-Extruser Dyssenergia or something like that.

30 years ago my first urologist was the very best I ever had. In my situation he explained that my bladder walls were rigid. Oxybutinin would make them more flaccid . I took the oxybutinin for 20 years and it gave me complete freedom to be out in the world.

In the last few years when oxybutinin appeared to have stopped working. I tried lots of newer meds and, like Cat Dancer tried Botox. Nothing worked. Life was closing in. My new urologists had lots more tools to try. Nothing helped. Then we realized I could take more oxybutinin. So I simply took more and I am once again in control.

Rigid bladder walls caused by my MS brain doing something. I forget now what the explanation is. I just know my first urologist was right.

[Virginia]

Thanks for posting this Linda.

[Sunshine]

JEanie, you are a true warrior. I loved reading this today. Welcome home!

[Jeanie Z]

:) Rose suggested I put witch hazel on it. I will do that as it worked on my arthritis. Jeanie :)

[stillstANNding]

It’s quiet in here today. I hope Howie is OK.

Jeanie, how is your leg?

I saw my new PMD yesterday. He is very interesting. I like him. He understands I have had a rough year and is sorry “that you are such an interesting patient.” He also said he will do what he can to prevent it from recurring. I asked if he had any ideas. Right away he mentioned celiac disease (autoimmune). He sent a ton of blood work and I see him again in 3 months.

Many of my blood tests have come back already. The liver enzymes, iron, ferritin, B12 - are all normal. I’m relieved at that.

Virginia, I made the Basque Green Bean, Garlic and Potato Soup for supper tonight. The house smells great and the soup was good. Peter bought Multigrain and Anadama bread to go with it. All is well here.

ANN