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gibbledygook wrote: have also in the last week flown for 24 hours to Sydney in order to watch our cricket team be thoroughly smashed by McGrath, Warne etc.

At least they were polite enough to make it quick

And welcome.

Oh, Alex! Who was the grumpy partner - you or the other half? You certainly can injure your calf muscle by over exercise: I know from experience, and the twitching of that muscle isn't a new symptom, but part of the repair. Still, its the new year now, with a clear and frosty full moon last night, despite the dark and drizzle over this side of the world this morning. So non-party routine coming up!

Cureo, at least it shows that Australians can be polite!

Sarah

I've decided that I'm going to add statins to my protocol as I continue to fret over the new twitching in my left calf which is probably related to a muscle or tendon strain but may be something more worrying. The lower part of the left calf now has quite a thick band of purple bruising from some more deep tissue massaging from a few days ago. The twitching seems worse in the morning and does seem to get better with a bit of light massage. Anyway I want to try the statins to see if the rest of my symptoms improve with them. I'll need to clear this with my doctor and have my liver function tested on lipitor 80mg.

I'm pleased to report that although my left leg is still quite severely bruised and still very sore the twitching there has nearly vanished. My physio has told me to apply arnica and NOT to exercise until the bruising goes and then to remember ALWAYS to stretch. This is my first ever sport-induced injury and I'm feeling perversely proud and pleased that it seems less and less of a new MS symptom and more and more a result of my pig-headed determination to exercise a lot.

I am also extremely pleased to report that since arriving back from Sydney I haven't had any spasms or need for anti-spasm medication (including liquor!). Not requiring anti-spasm medication after a long-haul flight is a first for me since going down in March 2004. Usually long haul flights require a lot of anti-spasm medication after arrival but not this time. Perhaps the nerve has just packed it in altogether! Or doubtless this evening they will return.

Yesterday I managed to walk a pretty sturdy-feeling 500 meters before my left leg started aching too much. This is significantly better than my walking in Australia which was very hot and humid and not often sober.


I'm now on my 28th pulse. I've had the tiniest flare in the left toes of burning sensation. The rest of my left foot is now and has been for several months subject to a numbness and tingling which is infinitely preferable to the burning pain and in fact I hardly notice my left foot at all now.

My weak bladder continues to be slightly stronger with only once nightly trips to the toilet and a slight improvement in control of urgency. I no longer am quite so panicked when I feel the need to go.

All my other symptoms (terrible right leg, swallowing difficulties, phosphenes, stiff/numb right hand) remain the same.

I've just returned from the doctor who has issued me with a script for lipitor 20mg. I will slowly build up to 80 mg after monthly liver function tests. This will be in addition to the antibiotics. The doctor examined my bruised left calf and concluded that I had torn the muscle or tendon and that I should wear high heels! Hah! Fat chance!

He thought the twitching in my left leg might be caused by the torn muscle but might also be a new MS symptom so we have opted to add the statin to the regimen.

The quacks are as clueless as we are!

Statins work for my spasticity. don't know if it works for on your spasms.Carolew Good luck.

gibbledygook wrote:I've just returned from the doctor who has issued me with a script for lipitor 20mg. I will slowly build up to 80 mg after monthly liver function tests.

I have a script for 80mg, but break each tablet into three. I take the larger two of the three chunks, which I would say gives me about 60mg / day. I dont notice any extra benefit when I am on 80mg over 60mg, so I leave that extra headroom for when I have a relapse or such (i think i took that idea off carolew . Additionally, when I first started lipitor, I noticed a distinct small reduction in the tingling in my feet within a few hours of taking it. I also read that they have a half life of 12 hours, so taking the dose in two parts makes sense. Just my take on my experience with lipitor.

Just back from a rather gloomy meeting with my neurologist in which he suggested that most of the new drugs being developed will be too expensive for the NHS to prescribe.
At least he said that my left leg twitching was an MS symptom which occurred because of the torn muscle and that once the muscle and tendon injury has healed up then the twitching will probably also go.
I have ordered privately a gadolinium enhancing MRI to see if there's new inflammation just to be on the well-informed side.

My physiotherapist/osteopath has confirmed that I have torn the muscle or tendon in my left leg. He could feel that it was enlarged and had formed scar tissue and that this was the likely explanation for the twitches. Thankfully these no longer seem to bother my left leg so much. He was quite concerned about my left leg and I'm to see him again on Friday. Wow! I can't believe it's not MS!!
Last week, fully believing it possible that I was developing a new MS symptom, I had a gadolinium enhancing MRI, the results of which are not yet in my possession. I'm quite hopeful that this now will show no new enhancing lesions.
After my scan I added lipitor 20mg daily to my regimen and am hoping to move to 40mg soon, subject to my liver functioning normally. This addition is a result of my rather unimpressive performance on the antibiotics. I've been swallowing the damned things for two years now and I'm almost exactly the same. Others, notably Ken on the web page CPn Help.org have some dramatic tales of illness and recovery on antibiotics. I sometimes can't help wondering if I have succumbed or rather not succumbed to some kind of mass delusion. Or maybe my recovery will be like how it started; slow and insidious. Still I am not any worse so I shouldn't complain. However I am going to take lipitor so long as my liver doesn't pack it in.

Alex, if you have been swallowing "the damned things" for two years now, and are, in your eyes, virtually the same, that is a good thing, not a bad thing. I suppose I made one of these so say dramatic improvements, but I am still not right: I still have an EDSS number of 2. I doubt if I ever will be absolutely right, but there is no delusion on my part. I went for months and months, without the use of my right hand. With SPMS it should never have come back, but it did. My weak point, though, is my walking. I decided to stop seeing how far I could walk because it would take me so long and I would be lurching along so badly at the end of a few kilometres that I judged that if I kept on doing this, I would end up with arthritis and aches and pains which I don't have at present. Previously I could go on thirty kilometre walks and at the end hardly notice I had done so. I still exercise regularly, though, so I might eventually take myself by surprise, but if I don't, I am not complaining because my neurologist wrote me off and reckoned I would be dead by now. He certainly didn't reckon I would ever be painting again: making large canvases from scrap, standing all day at them and even selling a few.

(In this, I'm not saying you shouldn't try lipitor as an addition, by the way, but I hope you are taking plenty of vitamins D and B12)

Sarah

At what point Sarah in your ms could you walk a few kilometres?

Hi Robbie, I went from being able to walk with a cane, about 100 metres, much less without support, to being able to walk about a kilometre after a year, to at last attempt, about five kilometres. This was after just short of three years, and I started out unaided, but used a cane after about half way, so you see, its not a miracle cure, but I was just getting steadily worse before starting.

Sarah

I guess I'm just impatient for some more improvements and trying lipitor might just help. Quite a few folk seem to have had improvements on lipitor so I wonder if it's anti-inflammatory/anti-viral properties could clear any vestiges of infection/inflammation and enable repair. I will continue with the antibiotics once my food poisoning has totally disappeared.

I have also resumed Chinese electro-acu-torture sessions of an hour weekly.

That sounds just amazing Sarah, It’s hard to imagine going from chair to chair to being able to walk kilometers. You have really found something good.

I'm another long timer on antibiotics, (over two years), and would like to add to this conversation.

The process of getting to where I was took decades. I developed symptoms as a result of irreversible (at this point) nerve damage caused by lesions. Antibiotics seem to have stopped the progress of the lesions and new damage. However, the only symptoms which I have lost completely are ones that had just come on or were developing when I started the regime. They ended, but started to creep back slowly when I stopped treatment briefly last spring.

It seemed miraculous, early on, to see the recent symptoms disappear and I became hopeful that they all might just disappear. Progress (forward, not backward) has been much slower, since the early days.

But realistically, what more could I expect? It's short of a magic pill that restored me to my twenty year old lustre, but I've still got enough left to get on with my life in a way I had not thought possible, being on a downward slide. Without hearing of Sarah's story, I never would have started.

The "cure" that everyone's looking for has to have two parts. Stop the damage, Repair the damage. I believe that when I am done with antibiotics, I'l be half way there. Taking the antibiotics has not been difficult for me. I'd evendescribe it as pleasant, compared to sticking a needle in myself every second day. I've been, overall, quite healthy.

Colin