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Re: Beyond Avonex and Valtrex

PostPosted: Thu Apr 07, 2016 3:44 am
by Scott1
Hi,
I went for an anticipated botox top up and my treatment was amended.

Although I feel the botox worked I was still experiencing a shortening in the length of my stride. This caused discomfort through the muscles surrounding the hips which also affected the hip flexors and the ITB down the outside of the leg. If I exercised ,the tightness meant I was over exerting the adductors and the calves also felt it.

The problem was coming from my left psoas which had just stiffened up so I lacked power through the legs. I imagine many people with MS experience this but associate the problem with their leg muscles rather than the psoas. The professor in charge skipped the botox and put me on Dantrium which is the brand name for dantrolene sodium.

The muscles that needed to be released were just too big for the allowable botox dose.

Dantrolene is a muscle relaxant that works on skeletal muscles. It targets the Ryanodine receptors that mediate the release of calcium from the sarcoplasmic reticulum and endoplasmic reticulum through ion channels.

This release is integral to the contraction phase for muscles. The calcium triggers the binding of muscle fibres but is dependent on RyR1 receptor to release it intracellularly. The Dantrium competes for binding sites for Calcium so the ion channel remains closed and intracellular calcium levels are moderated. As a result the muscles stay relaxed.

As normally the signal for muscles to release is ATP dependent you need to be making a lot of ATP anyway to get the best result.
If you take magnesium, it works the same way by binding to high affinity calcium activation sites.
So Calcium, Magnesium and ATP are all modulators of RyRs. Dantrolene competes for high affinity sites and that limits how many calcium ions open.

The effect has been amazing. The first day I went from being Mr Tight to Mr Floppy. It took a day or so to adjust as the whole pattern of my movement altered.

It is a drug with potential side effects but, after two days, I love it.

It is synergistic with Baclofen, it is not an antidepressant and I just take a low dose of 25mg morning and night.
It may be worth discussing it with your doctor if you are tight.

My feeling is if you don’t do some sort of exercise then you are wasting your time. The point of relaxing muscles is to let you stretch and strengthen them. Just doing nothing would be a terrible waste.

Regards,

Re: Beyond Avonex and Valtrex

PostPosted: Mon May 16, 2016 11:38 pm
by Scott1
Hi,

I've just been reviewed after 6 weeks. The Dantrium is still a great gift. On the 6 minute walk test I managed over 500 steps which was a record for me. I still have little issues that relate to putting up with an altered gait for 2 years. Thankfully, that is nearly resolved. Only an expert can pick the abnormalities.

What I was left with was bursitis in my right hip and some tightness down the outside of the left calf which are both from overuse. The bursitis was treated later today with cortisone right on top of the bursar and i think my pilates people can help me with some stretches for the external part of the calf.

Dantrium does cause weakness and might hit you if you haven't got fatigue under control. It is a matter, though, of exercising through it (ie Pilates). If you sit around and do nothing you will achieve nothing. By coincidence I had an appointment with my neurologist as well. He said he hadn't used Dantrium for years but is considering it again based on how I was going.
The Professor who gave me the Dantrium said I was the only person who liked it and many hate it. My guess is they do nothing and ignore exercise. He agreed. It is synergistic with Baclofen and I am still on a minute dose of 10mg before bed. I think it all helps. As I have said many times it is the sum of all the things we do that makes a difference as there is no magic bullet.

Regards,

Re: Beyond Avonex and Valtrex

PostPosted: Wed Oct 26, 2016 1:14 pm
by Scott1
Hi,

After months trying to get my bursitis dealt with I still had an underlying problem with a deep muscle called the performis. When this is tight you can't externally rotate your hip (as you would to swing your leg over a low fence or ride a horse etc) or abduct the leg (move it sideways properly). This tightness can produce a set of issues called performis syndrome which can be painful. This issue probably caused my bursitis. The good news is you can do something about it and its very effective.

Last week my right side was done and this week the left. The impact is immediate and very beneficial. You feel like there is lubricant on joints you just assumed never moved and your hips start to return to a more normal position which takes the strain off the hamstrings and lower back. As usual I would recommend you exercise to rebuild strength as any time you release muscles they are weak.

here's a video about the condition - https://www.youtube.com/watch?v=RfugnOzACRE Pity they couldn't get a human in the voice over.

The approach they used for me was to inject cortisone into the membrane over the periformis so it covers the muscle. It's a guided injection as they don't want to hit the sciatic nerve. On my right side the anesthetic gave me sciatic palsy for a couple of hours which is like losing all feeling in the leg right to the sole of the foot for a few hours. They were horrified but I laughed. Had worse things happen.

The botox people wanted to do it their way but that means you are out of action potentially for months till the neuron regrows. This way is like a magician waved his hands over you.

Regards.

Re: Beyond Avonex and Valtrex

PostPosted: Sat Dec 03, 2016 3:16 pm
by Scott1
Hi,

I have often suggested Pilates as a form of exercise that is suitable for MS. Brett Drummond from MStranslate asked me to help with a video of how to apply it. This is a short clip from a much longer piece that he is working with but it helps show what I do. (There is a lot more to come)

This is the link to the MStranslate http://www.mstranslate.com.au/ms-many-s ... -benefits/ . The clip is called "Multiple Sclerosis and Pilates".

It was filmed back in July so it does take a while to get it posted. I am better now than I was then. -Just keep improving.

Regards

Re: Beyond Avonex and Valtrex

PostPosted: Mon Dec 05, 2016 12:12 am
by NHE
Hi Scott,
Thanks for sharing your video.

Scott1 wrote:It was filmed back in July so it does take a while to get it posted. I am better now than I was then. -Just keep improving.


You look like you're doing pretty good there! It's good to hear that you're doing even better now.

Re: Beyond Avonex and Valtrex

PostPosted: Mon Dec 05, 2016 2:32 am
by Scott1
Thanks,

I just keep doing the things I often talk about here and Pilates is a very important part of regaining flexibility.

Sarah is my real secret weapon. Whenever I was lost, she was there just never letting me give up. Sometimes I'd get grumpy and she never let me give in to myself.

The choice of medication was all up to me but the fitter I got the more I thought about flexibility and making ATP and I just dropped any interest in demyelination.
What helps is, I think, is Valacyclovir, Q10, aceytl-l-carnitine, curcumin, magnesium, a good probiotic and Dantrium. The Dantirum relaxes muscles so much that I would consider it almost dangerous if you don't exercise to build strength.
All the exercise needs to be eccentric (ie the muscles are strengthened in an elongated state) and that is the basis of Pilates exercise.

I must say a big thanks to Brett Drummond. If you have a topic you want pursued he is very receptive. His MStranslate concept is very sound, he just needs feedback that he is on the right track.

Regards,

Re: Beyond Avonex and Valtrex

PostPosted: Fri Aug 11, 2017 3:28 pm
by Scott1
Hi,

Finally the video I discussed earlier has been put up. What I'm hoping it shows is the variety of exercises and the range of difficulty you can explore from Pilates and I hope what I've said is helpful to some.

This is a link the video https://www.youtube.com/watch?v=4lBkf3GVhEE and this is a link to MStranslate who made it.

Facebook: https://www.facebook.com/MStranslate/

Website: mstranslate.com.au

They have a great deal of interesting and objective posts.


Regards,

Re: Beyond Avonex and Valtrex

PostPosted: Thu Nov 09, 2017 5:54 pm
by Scott1
Hi,

I was asked by Brett Drummond from MStranslate to do a live Q and A on Pilates and MS. It has apparently attracted quite a large audience and for that reason I thought I should post a link to the facebook page of the studio so you can watch the replay if you are interested.

Here- https://www.facebook.com/pilatesonbourke/ (scroll down a little to find it)

We did have some technical difficulties with the wifi so the video is broken into 3 parts. I hope this is helpful and answers some of the questions that people may have.

Regards,

Re: Beyond Avonex and Valtrex

PostPosted: Fri Nov 10, 2017 3:16 am
by NHE
Is there a link for those of us not on facebook?

Re: Beyond Avonex and Valtrex

PostPosted: Fri Nov 10, 2017 4:44 am
by Scott1
I'll ask Brett for one. Might take a day. Sorry.

Re: Beyond Avonex and Valtrex

PostPosted: Sun Nov 19, 2017 9:05 pm
by Scott1
Hi,

This is a link to the facebook Q and A from MStranslate's library.

Unfortunately the sound is a bit soft and its been recorded via a phone camera. That seems to be the medium Facebook like it be done on rather than a conventional camera.
http://www.mstranslate.com.au/facebook- ... sclerosis/

Also, This is a link to MStranslate's library of articles which may be of interest to some http://www.mstranslate.com.au/

Regards

Re: Beyond Avonex and Valtrex

PostPosted: Thu Feb 22, 2018 2:19 pm
by Scott1
Hi,

After a really long period of just improving through doing all the things I've mentioned earlier, I overstepped the mark and decided I should be able to get more range out of my legs in external rotation. I tried sitting astride a bench with my legs dangling over the sides. Doing this gives me discomfort in front of the hips as well as down the insides of the thighs. Despite that, I was fed up with not being able to get that range so I tried doing it and stayed in that position.A big mistake. However, I did learn a lot from doing it.

The big problem was the stretch aggravated a muscle in my backside called the periformis. It was obviously tight and I stressed it by trying to externally rotate my legs. As a consequence it locked up. This meant that when walking I wasn't using it and had to rely on other muscles to carry it around. Additionally, I would wake up in pain the middle of the night and leg cramps started to come back. The reason is the sciatic nerve passes through the periformis and can be crushed by the muscle triggering a response.
The effect of not using the periformis is other muscles get really tired and tighten up. My hip flexors started to hurt, my adductors got sore, my hamstrings tightened, my lower back started to tighten, I had pain below the knee as well as being generally grumpy. I felt all the old symptoms which I hear people often repeat on these pages.
As I have already been treated for periformis syndrome, I went back for a another injection. This time, the needle went into the lateral part of the periformis rather than along the membrane. It did two things: 1) it broke the fascia and 2) the cortisone relieved the inflammation.
The effect was dramatic. Within a day I was back to normal and now have more of the range that I wanted without pain.
If you have pain in the front of your hips and down the front of the legs don't assume that's where the problem actually is, It could be the periformis and it just might need a shot of cortisone.
The important muscles for gait are the psoas (which is in your torso) and your periformis (which is in your backside). The pain in your legs is probably a response to overuse because those two muscles aren't doing much. You need to be sure they function or you won't fix the pain in the hips or the legs. You may need a relaxant like cortisone or Dantrium (which I use) but you definitely need to be able to isolate the muscle and work it so it regains function, which is what I get with Pilates.

Hope that helps someone.

Regards,

Re: Beyond Avonex and Valtrex

PostPosted: Thu Sep 20, 2018 7:40 pm
by Scott1
Hi,

I've just crawled off the deck after having the head-cold from hell. Whilst it isn't MS related, all my tight muscles, aches and pains became really exaggerated.

Normally, my main residual altered sensation comes from damage to C7 on my cervical spine. Whilst I was sweating and freezing at the same I got out of bed to go to the toilet. My legs were tight but both arms felt like a tourniquet had been applied from the shoulder blade to the fingertips. Both arms were very sore. I could move them but was unable to feel the light switch at all.

Now the fever has broken all of me feels much better. The arms are more normal and the hands are just a little sore.

The lesson. for me, is not to ignore underlying infections. They don't have to be MS related but the inflammation they bring exaggerates the symptoms. So when your doctor says an infection doesn't cause MS, it will still cause inflammation. The point is you still need to address all infections because the inflammation they cause can make your MS symptoms worse.

Regards,

Re: Beyond Avonex and Valtrex

PostPosted: Sun Sep 30, 2018 8:35 am
by vesta
Scott1 wrote:Hi,

I've just crawled off the deck after having the head-cold from hell. Whilst it isn't MS related, all my tight muscles, aches and pains became really exaggerated.

Normally, my main residual altered sensation comes from damage to C7 on my cervical spine. Whilst I was sweating and freezing at the same I got out of bed to go to the toilet. My legs were tight but both arms felt like a tourniquet had been applied from the shoulder blade to the fingertips. Both arms were very sore. I could move them but was unable to feel the light switch at all.

Now the fever has broken all of me feels much better. The arms are more normal and the hands are just a little sore.

The lesson. for me, is not to ignore underlying infections. They don't have to be MS related but the inflammation they bring exaggerates the symptoms. So when your doctor says an infection doesn't cause MS, it will still cause inflammation. The point is you still need to address all infections because the inflammation they cause can make your MS symptoms worse.

Regards,


Greetings:

And cramp up the muscular system which obstructs free CNS fluid flow to impact the nervous system. Good to know you are feeling better.

Regards