Botox for muscles

[Kitsey]

I’m having a really hard time with the bicep muscle in my right arm. Both my right arm and leg are impacted by MS. I had a capsule release surgery on my right shoulder which went well. Unfortunately, the tone in the bicep is limiting my range of motion. My neuro and PT suggested that I try Botox to relax the muscle. Has anyone used Botox for muscles and how did it work for you? Thanks, in advance, for your input.

[Humbrd]

Sorry to hear you're having a rough time with your arm and legs. I've never heard of capsule release surgery. I have not had the Botox injections, but I wish you well and find the answers that you need.

[Kitsey in reply to Humbrd]

Thanks very much.

[MSnWV]

I had Botox injections for leg and hand spasms. It did help the spasms a little but it mostly just numbed my feet and hands to make them even more useless. I did not like it at all. I could not wait for the Botox shot to wear off. It was probably me but it made things even more frustrating. I would not say not to try it because what does not work for one MSer may be a wonder drug for someone else. You should give it a shot (pun intended). If it does not work it will wear itself out in like 3 months (at the lowest dosage). Good luck.

[Kitsey]

That’s really very helpful. Thanks for your input.

[palomino27]

Botox was a disaster for me. My doctor gave me the lowest dose possible in various spots in my legs. She said the results were not good enough to continue. When it wore off my legs were weaker and the spasticity was stronger because my legs were weaker.

[Kitsey in reply to palomino27]

Thanks for sharing your experience.

[TonyiaR7]

Hi KitseyI have used Botox in shoulder and paraspinal muscles back in 2001 for 4-5 years. Severe stiff muscles. They use a device to make sure they are hitting the right area in the muscle before injecting. Rehabilitative and stroke (physiatrist) was very good. We started with small amounts and increased based on my feedback. I gave him a log. I would mark areas that worsen and take photos and sent them to him. So he can make decisions on next treatment plan. But i had to stop because my back muscles were becoming weak from the Botox treatment. So I stopped and had PT/OT to strengthen my back muscles. I didn’t have anymore severe spasms until now during the pandemic. Probably less mobility. Unfortunately, 2021 they have returned. But my new psychiatrist at JHK is not comfortable to give Botox for paraspinal muscles. Have to be careful in this part of the body; be careful not to get paralyze or had a small Nemo (lung puncture). Getting Botox injections for ridgid/spastic muscles along the spine, are quite painful. I had to get the injections in multiple locations, small dosages to deal with such a large area. Botox for the shoulders or near neck was fine. No signs of weakness. But must exercise. If they didn’t give you enough or too much you have to wait until the next time (3 months) for it to wear off. Too much Botox can cause muscle weakness. I seen it hands and face and peoples muscles are so weak that they can’t hold a folk or have difficulty chewing. Definitely start with lower dosages and increase /fine-tune over time. Use those limbs/muscles. It was used first for people who were crossed eye to relieve muscles. Now they have other ways to deal with cross eyes.

In 2015 I received Botox injections for legs, loss tone in my legs and spasms in quad, feet, … Right leg worse spasticity/rigidity than left leg. I wish I could have may original psychiatrist who did my back at JHK. However, different psychiatrist from Upenn rehabilitative medicine, and she did the Botox for legs. She should have not given me the same dose for both legs. I really had to be in control. I stopped because she didn’t listen to me that the dose was too much and cause my legs to buckle. The toes/feet are a challenge. Also can become weak. Need a doctor who listens to your feedback, starts slow and knows what they are doing. I didn’t feel that way with Physiatrist at Upenn. Hard to try to change to use one of her other colleagues. Front desk wasn’t good about ordering/coordinating my Botox in time for injections. Several times i drove from NJ to Philadelphia either to find out they didn’t have medication through my insurance and I had to pay full price for Botox (very expensive) or I had to reschedule. Or they would cancel the appointment even if my insurance fedex the medication but it hadn’t yet arrived a week before my appointment.

It definitely does work and gives relief. But it can be a hit/miss. When they do have the right areas/dosage, feels great. But must exercise (some weight building, movement for coordination, or balance). Otherwise your muscles get temporarily weaken. I did see others in PT/OT with not satisfactory results from Botox. Go slow. Always can get more the next time. Let it wear off (3 months) and refine the dosage and/or injection sites. Only pain from injections was from my rigid/spastic muscles along spine. Other areas of the body injections are not painful. If physician is not responsive to your feedback, then felt a different physician. I will not continue with ineffective injections too little and definitely too much. And still must Exercise.

This is my experience. Each person is different. Good luck!

[Kitsey in reply to TonyiaR7]

Thanks very much for sharing all of this info. You really have extensive experience. My doctor does low dose to start. We’ll see how it goes and hopefully it will give me the freedom to use my arm more. Do you live in South Jersey? I have friends in Gibbsboro and Berlin.

[TonyiaR7 in reply to Kitsey]

Centra NJ. I have friends who live near Glassboro and Rowan College. I like going to Wheaton Village (now WheatonArts). With the pandemic, we have not driven much to South Jersey and then drive to Philadelhia. Cape May is fun too! One day I hope to go again.

[Kitsey in reply to TonyiaR7]

I certainly hope you will be able to go soon.

[TonyiaR7]

What is capsule release surgery? What is it for and what does it do?

[Kitsey in reply to TonyiaR7]

I had a frozen shoulder. The surgery released the joint so I had greater range of motion. It was the easiest surgery I’ve ever had. My bicep is so tight it limits what I can do. It’s so incredibly frustrating.

[TonyiaR7 in reply to Kitsey]

How did they release the frozen joint with a capsule? Was the bicep in a contracture? Sorry, I am just trying to understand.

[Kitsey in reply to TonyiaR7]

The shoulder has a capsule of connective tissue around it. When the tissue get thick it restricts the movement of the joint. The surgeon does an arthroscopic procedure to release the connective tissue. I had it done on my left shoulder a few years ago. It’s truly the easiest surgery I’ve ever had. The bicep muscle is in the front of the upper arm. Because of MS this muscle has become extremely tight. The aim of Botox is to relax the muscle so it will allow me to get better range of motion and a whole lot less pain.

[TonyiaR7 in reply to Kitsey]

Thank you for explaining in more detail. I hope you get relief.

[IFwczs]

I have personally not used it but have heard from many people that Botox has weakened their muscles, to the point where they could no longer walk if they got it in the legs.