botox

[olly]

found this article this morning about using botox for muscle spasms,very intresting.
Botox fixed my wonky walk: Why doctors are using those cosmetic jabs to relieve painful muscular spasms | Mail Online

 

[Alyoop]

Yes, they have been using botox for ages for spasms, especially torticollis and blepharospasm. Darn expensive!

 

[HelenL]

a friend of mine uses it so she can speak, it gets injected into her throat... not fun!

 

[Alyoop]

I have a friend that has botox for bladder spasm, no fun, but really makes her life easier.

 

[Whitsend]

I had it to try to straighten my ankles so I wouldn't wrench my knee. The procedure was torture, very similar to having an EMG. It worked pretty well, but wears off in 3-6 months. However, it caused my ALS symptoms to advance very quickly over a 2 -3 week period. Would never do it again. And the doctor ended up putting in my chart that I had an allergy to botulism. (Doesn't everyone?)

 

[BLPhill]

Whitsend, I have often wondered if the botox injections would advance ones als symptoms. Of course I wouldn't take any drs word for it. Thank you for the answer.

 

[grandmommyk]

My husband is not the usual ALS patient, but I'll add his experience with Botox. He has been having Botox injections in his salivary glands for about 5 years now to keep him from drooling or choking and getting the saliva into his lungs. He has one injection on each side just under the jaw bone and another one on each side near the side burn area for a total of 4 in all. He started out every 3 months, later went to 4 and now does every 5 months. He says they are not painful and doesn't even flinch. He has also never had any side effects that I am aware of. He does get really dry eyes which I think is a side effect, but the doctor doesn't.

Although he has done so well, the doctor went over the risk with him and left the decision completely up to him. He told Rick that since he can't see exactly where the gland is, if he misses just a little and hits the muscle instead, it will cause the muscle to work even less, sag, etc. This will cause even more problems than he presently has. Rick still wanted the procedure.

His doctor is apparently one of the best. He gets the injections at the VA, so cost has not been a factor.

 

[kevinw]

I just had another visit with the MDA/ALS clinic on Monday and again my neuro wanted me to think about injections. She mentioned it about a year ago, so I made an appointment with the doctor that would do it. During the visit she wanted me to be up to the max dose of Baclefen of 80mg (I was at 40mg) at the time. Now I am at 80mg of Bacefen per day, 16mg of Zanaflex per day, 3mg of Klonopin per day, 100mg of Rilutek per day, and from my cardo doctor 80mg of Lipitor per day and 20mg of Nadolol per day. My presciption company will not fill a higher dose of Zanaflex a day due to the dose of Baclefen a day.

Long story short I am sick of pills that don't help, mixing/matching/changing doses that don't help....so I didn't book an appointment yet because I have know idea what to do or what will help. I go back to the clinic the first week of December and I know it will come up again (she claims she knows right where the injections should be made for the maximum benifit). I guess I am just venting and ready to stop all this medication that is supposed to help!

Thanks for listening.......:lol:

 

[Alyoop]

If your insurance covers it, maybe it's worth a try? You could probably stop the ritulek as it is " off label" for PLS, I think and has very poor evidence of efficacy in ALS. We can't get zanaflex in our country so baclofen is the only choice.

 

[kevinw]

I think my insurance will cover it (per my nero), it would only be "specialist" co-pay. I did mention stopping the rilutek, but she said that the long term help of rilutek with upper motor neurons is unknown and could only be helping any change over to involving lower motor neurons. The rilutek is expensive, but I am able each year to get it from a program of the National Organization for Rear Diseases for free. So as long as it is doing no harm (checked with lab work), she suggests that I continue it.

 

[Alyoop]

I always new I had a " rear " disease, thats why my butt is disappearing! So sorry, my sense of humour got the better of me. Good you get Ritulek for free then.would be a waste of money otherwise. Taking it just for a doctors rather strange reasoning and paying heaps would just be cruel.
I would do the bottom if it was free. It's worth a try and nothing lost if it fails.

 

[notme]

Aly, if its any consolation, zanaflex didn't do crap for my spasms and cramps--the baclofen worked MUCH better--but Valium helps, too...if they have it there

 

[Alyoop]

Omgoodness. How did my iPad put on bottom instead of Botox! Crap so sorry.

Patty when a country like ours limits certain drugs, it's usually because they are expensive and lack the efficacy of the cheaper drugs. It interesting to hear about your experience with zanaflex. USA, just courts the drug companies, you see it at the medical conferences. It's very interesting!

 

[kevinw]

I always new I had a " rear " disease, thats why my butt is disappearing! So sorry, my sense of humour got the better of me. Good you get Ritulek for free then.would be a waste of money otherwise. Taking it just for a doctors rather strange reasoning and paying heaps would just be cruel.
I would do the bottom if it was free. It's worth a try and nothing lost if it fails.

I might be missing something....but I know Botox can really help with spasticity with walking. But I have never seen any information that states "Rilutek is a waste of time for Upper Motor Neuron Disease"? How could anyone know if the long term benefits of Rilutek with UMN Disease is helpful to slow down progression to Lower Motor Disease. Yes, I get it free...but even if I didn't I have one of the best ALS neuro's on the east coast and if she say's there could be a benefit to it, then I don't find it a waste.

Sorry to hijack the thread regarding Botox...but I would not take or be recommended something additional that would be considered "A Waste".

 

[Alyoop]

Ritulek has poor efficacy for ALS, but it is all that is on offer. I do not believe that there are any clinical trial data that shows the drug is of any use for PLS, but I would be more than happy to change my opinion if you can find the supportive research.
A doctor thinking it " may" be of use, is very different from evidence as to why they think it " may" be of use.
You only need to go to a neuro conference and stand around the fancy drug company stands to know why some doctors prescribe certain medication. To prescribe off liscense, asks a whole new bunch of questions.