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Cherie708
18th April 2013, 06:26
Hello I am in the U.S. And am desperately searching for advice. I am 44 yrs old, have had motor neuron disease since I was about 17. Very slow progression. I have neurogenic bladder and they are wanting to put botox in my bladder to help with its overactivity. The botox site says not to use botox if you have motor neuron disease but my neurologist ok'd it. I am very unsure what to do. Is botox used on people with motor neuron disorder?

Thank u
Cherie

john
18th April 2013, 08:08
Hi Cherie,
Botox is used in the uk to help to control saliva overproduction. I have also read that it should not be used in cases of mnd/ALS.
If you look on the US site alstdi you will find a recent thread on the same problem with reports of the effective use of drugs to reintroduce control.

http://www.als.net/forum/yaf_postst52436_Bladder-Problems--possible-fix--GabaA-Receptor-Agonists.aspx

This was started by someone in Britain. Hope it provides a solution for you. My wife had Botox injections several times before she died and I have often wondered if they had an adverse affect. It may be the medical profession take the view that it is the lesser of two evils in the absence of any known cures.
Good luck with your search and welcome to the forum.

John

Cherie708
18th April 2013, 12:46
Thank you for replying John and for welcoming me. Did your wife have ALS????? I do not. They are unsure what I have. Just that its motor neuron. I will be calling my neurologist today. Is botox used for other issues besides saliva in this group?

Thank u again
Cherie

john
18th April 2013, 13:13
Hi again Cherie,
Yes my wife had the ALS variant of motor neuron disease. Botox is used for cosmetic purposes originally but I have only ever heard of the injections to slow saliva. I have not heard of the use you are facing so can add nothing I am afraid. Wikipedia might be able to help . Bladder problems are not a topic I can recollect on here but I remembered the discussion on the alstdi thread. It was started by a guy called Olly who is an obsessive researcher. If you were to send him a pm I would think he would come back to you. I have always found him very helpful.
John

ccinjersey
18th April 2013, 13:15
Hi Cherie

Welcome, and sorry you need to be here. As you know Botox is all the rage here in the US. Personally not a fan of Botox, it’s seems to be prescribed for just about everything these days. For a temporary cure for wrinkles to illnesses. In my opinion be very cautious, and very educated about it. Remember you are putting another bacteria toxin into your body. Does the risk outweigh the benefit? There could be much more safer, homeopathic remedies, and natural solutions for you. Do your research honey, be your own advocate. Also remember big bucks for the big pharmaceutical companies. Your wellness is not their priority, pushing more drugs down the consumer is.

Good luck to you.

CC x

Cherie708
18th April 2013, 17:27
My neurologist said the risk is minimal as they would be using so little botox. John after the botox what other symptoms did your wife develop? I don't know how to send a pm but would love to contact the guy you told me about. If I don't do the botox we r out of options for my bladder other then major surgery. This is so tough. My urologist months ago didn't want to do boto as it can cause retention but we have tried and tried other thinggs and I am miserable. I despise this.

john
18th April 2013, 18:09
Hi Cherie,
You would need to join alstdi to pm him I am afraid he is not on this forum. On here you need 5 posts before you can pm anybody.
I don't think my wife developed any symptoms from the botox . She was a fairly rapid progresser before the botox so it would be wrong to suggest it had any affect on her outcome. It did help with the saliva which it was intended too so far we could tell and was repeated about every 3 to 4 months. I think she had 3 sessions altogether but I do not know what quantity. It was an injection each side of her neck.
In the alstdi I thought there were successful drugs reported but you may have tried them already. Unfotunately we are very much individuals and what works for one may not work for another.

John

Cherie708
18th April 2013, 18:57
I have tried and tried to register at altsdi site. it even changes my password for me then says password incorrect. Ahhhhhhhh. :)

john
18th April 2013, 19:03
It doesn't seem to like i pads very much but I don't have problems with my laptop. I stay logged on as it seems to otherwise need a reset of password every time which as you say GRRRRRRR,
john

Cherie708
18th April 2013, 19:12
I can't sem to log in. I can see all the topics and can't find an Olly. Do you see him often on there to send him a message. I could give you my email.

Cherie708
18th April 2013, 20:36
CC, I have tried so many different things besides all the meds from doctor I am also on my 2nd interstim implant. they really don't know what else to do. I am in a wheelchairandneed help to transfer so going to the bathroom a lot affects all those aroundme besides just being miserable for me. My urologist suggested botox for the urgency and frequency. I even had to learn to self cath in case I retain. So unsure what to do.

ccinjersey
18th April 2013, 21:43
So sorry to hear of your difficult situation Cherie. You mentioned that the Botox site stated not to be used with motor neuron, but your neuro. doctor approved it. Does your neurologist specialize in mnd? Has the neuro. doctor and urologist doctor consulted one another? Are they agreement this is your best option, and your just not sure about it?

Have you tried researching any Facilities, or Hospitals the specialize in bladder illnesses? Search around in your State, maybe you might find a facility that might have more advanced options for you, or maybe would be in agreement with the Botox.

When I say I'm not a fan of Botox, I say that because I've seen, and heard of woman who use it for cosmetic reasons, and actually cause themselves muscle and nerve damage over periods of time. Of course the plastic surgeons of the world will disagree, again back to the big bucks. Clearly this is not why you are using it, and it may be the solution to your problem. Which ever direction you go, the very best of luck to you.

CC

john
18th April 2013, 23:18
Hi Cherie,
Certainly I see he was posting again today.I could send him an e mail and ask him to get in touch. Do you want to send your e mail via a pm?
That should be possible now.

john

Cherie708
19th April 2013, 00:55
No my neurologist is not a specialist in mnd but he's one of the tops neurologists at university hosp of Cleveland. I searched and went through other urologists to find the one I have. I love him. He has performed 3 surgeries on me. I feel I am at the best of the best. He and my urologist are communicating via email.

Thank u for the well wishes.






So sorry to hear of your difficult situation Cherie. You mentioned that the Botox site stated not to be used with motor neuron, but your neuro. doctor approved it. Does your neurologist specialize in mnd? Has the neuro. doctor and urologist doctor consulted one another? Are they agreement this is your best option, and your just not sure about it?

Have you tried researching any Facilities, or Hospitals the specialize in bladder illnesses? Search around in your State, maybe you might find a facility that might have more advanced options for you, or maybe would be in agreement with the Botox.

When I say I'm not a fan of Botox, I say that because I've seen, and heard of woman who use it for cosmetic reasons, and actually cause themselves muscle and nerve damage over periods of time. Of course the plastic surgeons of the world will disagree, again back to the big bucks. Clearly this is not why you are using it, and it may be the solution to your problem. Which ever direction you go, the very best of luck to you.

CC

ccinjersey
19th April 2013, 02:16
Hi Cherie,

Good to hear, sounds like your in great hands there! Also hope you take John up on his advise and find the answers you are seeking, making your decisions that much easier.

CC x

berdbrain
19th April 2013, 18:38
Hi Cherie, I have read what everyone said so far and I'll put in my experience for you to consider. My sis has Bulbar MND and she was driven crazy with the saliva issues. She tried everything, patches, mediation everything and she had Botox about 5 weeks ago. She had 4 injections - she goes to John Radcliffe Hospital which is a very good hospital and she had great confidence in them there.
I did lots of research for her, and as CC says Botox is most famous for cosmetic surgery but it is also used for good ...all sorts of things. I have a cousin who suffers from something (I cannot remember the name but it's in an old post of mine) and his neck seizes up and he cannot move it....well he has regular botox injections and he can carry on with life as normal and is able to work as normal.
I know, people advise caution and I agree with that, but asking my sis is she happier having had the botox she says yes.......she will go back to the hospital and she will have to weigh up the pros and cons and decide if she wants to have another set of injections.....it is a very difficult decision, really between a rock and a hard place but botox was used for good when it was first 'discovered' and the specialists have better targetted the areas that they want to use the botox to help.
Good luck with whatever you decide, I'll be thinking ofyou
XXXXDebbieXXXX

Cherie708
20th April 2013, 02:44
Thank you Debbie for sharing about your sister. I was seen by my urologist today. I did not do the Botox yet. I told them I need more time. My uro talked to my neurologist and both agreed I would be ok. It sounds promising and I will probably do itin a few weeks.

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