Gibbledygook's antibiotic log

[CureOrBust]

...I have a hideous cold ...

Is this a definite trigger for a relapse for you?

[gibbledygook]

Do you know, I've never really had a relapse which I've been aware of at the time, just very slowly accruing new symptoms. I can't say that colds have made me worse although I can say that new symptoms have tended to appear more frequently between august and april although they have equally appeared at other times. Unfortunately I have no idea what makes me worse and when it's likely to occur except that fertility treatments definitely make me worse. But that's not going to happen again, ever, so hopefully that will be my last instance of getting worse!

[SarahLonglands]

Hi Alex,

I'm glad you are now getting over the fertility treatment episode, but a shame you have acquired a hideous cold now to replace it! Wise idea to take another week off metronidazole while it lasts, though, and concentrate on brandy (but in moderation ) and lemon and books on Buddhism.

You know, Cureo, when I was still in the RRMS stage, colds would never trigger a relapse either.

Sarah

[gibbledygook]

This is my attempt to put a chart in my regimen. It should show primarily that until my fertility treatment my walking was stabilizing around the 600 meters mark AT WORST (high humidity/temperatures/hungover/at weddings etc).

[SarahLonglands]

Gosh, Alex, this is a very comprehensive chart, and very easy to read. So this is what you produce when holed up at home recovering from your cold, then? I think it should be very encouraging for other people to read, especially when coupled with your assertion above that you have never had a relapse since it all began, but just a gradual accrual of deficits.

Sarah

[gibbledygook]

Hi, yes, I realized my previous chart wasn't very clear so have gone for a rather large format. The red boxes and arrows indicate new neurological deficits and the green boxes and arrows indicate reduction in neurological deficits so the absence of red boxes as time elapses and the gradual appearance of a few green boxes is encouraging. Owing to problems of space I haven't put in the number of pulses or certain other symptoms such as numb hand or poor bladder but hopefully I'll squeeze them in on the next green boxes!!
Pulse 25 next week.

[wiggy]

Great chart Alex,
thanks for creating this - tells your story. Pulse 25 - that is progress!

[gibbledygook]

I have completed my 25th pulse of metronidazole last week and have continued my vigorous exercise regime of now 45 minutes on the cross-trainer 3 or 4 times a week. I seem to have gone from a weak bladder to a much more retentive one. I no longer need to go to the toilet in the middle of the night and this is a 3 week improvement that I haven't experienced in 2 years or since the bladder started playing up in the middle of the night some while ago. I'm not entirely sure when it became bad but it was a long time ago. Hopefully this will continue.
I managed to walk 1.2km at the weekend although I was limping by the end. So on the whole the bad leg is stronger but still no stronger than it has been at best over the last 2 and half years. I am over the fertility treatment worsening in leg function, however.
I don't think I've had any movement induced phosphenes for a few months now.
My right hand remains stiff and numb and my index finger occassionally has involuntary movements which started around about the time I started exercising vigorously.
My foot burn is still very quiet though the last pulse of metronidazole caused a slight burning sensation on the arch edge of the heel of the foot. Interestingly when the foot burn was bad the nasty sensation was predominantly in the arch of the foot. Now when I have burning sensations they are restricted to areas beyond the arch, like in the toes or the heel around the arch. It seems as though the centre of the damage/lesion was in the arch and the periphery is the heel and toes.
I still have night spasms but am on 2 to 4mg of zanaflex for this.

[SarahLonglands]

Hi Alex, I think you have now overtaken me in the number of pulses you have done, due to the fact that I stopped full time treatment at just over a year. I am very glad that you seem to be improving again after the fertility treatment episode, long may it continue.

Interesting about the foot burn, by the way. I still sometimes get footburn in my big toes, mainly the right but also much me slightly the left. It used to be throughout the bottom of my right foot I really am not sure whether it is a relic of MS or if it is merely a peripheral neuropathy due to the longwinded dumping of endotoxins. I say this because all the MS damage was on the right and when you look at one of my MRIs. the damage in the brain was much more on one side than the other. Endotoxins are going to circulate around the body though, which might explain it. David, though, sometime takes me unawares and says either "Stand on your right leg" or "Stand on you left............" Once or twice I have replied "What, at this time of night, you have got to be joking," but each time I seem to be able to lift one foot higher, then when attempting to repeat it, I can easily misbalance. You should ask your partner to do it from time to time!

Sarah

[gibbledygook]

I have been having electro-acupuncture therapy since mid-summer about once every week and recently regularly every week. Over the last few weeks the acupuncturist has been increasing the current applied to the needles as well as increasing the amount of hard and painful post-acupuncture massage. Today the acupuncture became really painful around a needle above the right knee, furthermore the massage was absolutely excruciating. I'm really beginning to wonder about whether or not I'm being a complete mug or masochist or something. Does anyone else have a view on acupuncture/chinese medicine?

[gibbledygook]

I completed my 27th pulse of metronidazole last week. My walking continues to be pretty dreadful and is much the same as when I started the antibiotics over a year and a half ago.
The foot burn is still very quiescent and scarcely bothers me except when taking metronidazole although I didn't notice it on the last pulse.
My bladder continues to appear to be slightly better and I only need to go to the toilet once a night at most. This is a relatively recent improvement (over the last 3 to 4 weeks).
I only rarely notice movement induced phosphenes but they are there occasionally.
My right hand remains the same, numb, stiff appendage that it has been for years.
I sometimes fear swallowing still. This is the first symptom I noticed in 2001.
I still have spasms at night though they disappear with about 4mg of zanaflex.
I also continue with a very painful type of electro-acupuncture once a week which seems to make my walking a bit worse immediately after treatment.

[SarahLonglands]

Here's a comparison from me at just over the three year mark, but remembering that my walking was nearly zero when I started, my right hand was useless but I have never had any swallowing difficulties.

Because I went intermittent at just one year, I have done slightly fewer pulses than you! I gave up worrying about how far I could walk after my mammoth expedition back just the day the weather got really hot in early summer. I did about four miles, but it took far too long and I was walking so badly for about half of that, I reasoned that I might be doing more harm than good, by putting too much strain on joints not at all affected by arthriticky tendencies, so I content myself for now with the airwalker or cycling small distances on the flat. If I walk small distances I am fine.

Foot burn is usually minimal but can be more apparent in the evening.

I also still have to get up once in the night if I get up at a reasonable time.

Phosphenes are a distant memory but frightened me at first, making me think that my eyes would be the next thing to go.

My right hand is fine, except that it can tire towards the evening if I have been painting all day.

Spasms started in 1999, but now are very rare, only at night and not troublesome enough to take anything for.

Do you think electro-acupuncture helps? I only ask because I am totally squeamish about things like that.

I hope you both have a pleasant and peaceful Christmas.

Sarah

[gibbledygook]

Hi Sarah!

I'm really not sure about the electro-acupuncture. My walking is almost certinaly worse immediately afterwards but I did think it that there was a very slight improvement in the 2 days after it. However this could just be wishful thinking. It is surprisingly painful, both the electric pulses and the massage afterwards. I have also been given a tea which tastes of liquorice which I'm meant to drink twice a day but which I haven't!!
I'm going to stick with the acupuncture until my course runs out in a couple of months and then see.

[mrhodes40]

Hi ALex
I have used electro acupuncture and like you thought it made my walking worse immediately afterwards and maybe a little better the next day or so. I also could not be sure. For me, it eventually became something I could not afford to continue to experiment on. The tremendous expense and limited benefits were disproportionate. That having been said, I love acupuncture for pain relief. It seems to work well for that.

The chart is amazing. Thank you for taking itme to do that.

marie

[gibbledygook]

In late November 2006 I decided that I had hurt by way of sprain or strain my good left leg calf muscle and stopped my rather extreme exercise regime for a week. Since then I have not exercised very much except my liver! My left leg calf muscle has been achey and twitchy since this time. At first I thought that the twitchy feeling was just sensory but a few days ago I examined the leg and saw that it was indeed twitching. This seemed to suggest a brand, new MS symptom rather than a leg injury although my subsequent research suggests that in the case of severe sprains, leg spasms may ensue. Yesterday I had a deep tissue massage and have come out in bruising in the left calf which is now very sore. I conclude that I have a muscle injury which has aided the development of a new MS symptom by which I mean I wouldn't have the twitching, MS-type symptom if I hadn't hurt my left leg calf muscle through overtraining. If you get my drift.
I 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. This flight was the last occasion for the spasms in my right leg, so all is not doom and gloom. Mind you, the alcohol consumption has been fairly elevated and this does tend to make my right leg spasms disappear. It also tends to make my walking pretty appalling so I have been on a bit of an emotional roller-coaster since arriving what with jet-lag, grumpy partner syndrome, hangovers, parties, fireworks, saturated fats etc etc. All in all these last 4 weeks have been a bit heavy on the old MS front and I shall be very glad to get into a non-party routine.