This Is MS Multiple Sclerosis Community: Knowledge & Support

WW
Good to hear! That is why it is so helpful to keep a log-it not only helps you as the patient keep track of what is going on, but it also allows others to follow and see how it relates to them. Glad you are seeing some improvements!
Lori

Update. Last post I was very low- all getting worse etc and little to write about- other than fewer migraine.
Recently there have been small changes which I have been reluctant to post because improvement can often be a precursor to significant and permanent decline.
Seeming improvement to my core- could stand alone for longer was rapidly replaced by falls and bladder problems and really at end of my tether, but this corresponded to a change in anticholenergics- for bladder- and a mini pulse. Since then there has been slight improvement to the core but walking with sticks still lousy.
So am feeling a little better. Remember that my SPMS NEVER improves or stops so..... I am mindful of a different exercise regime so it could be either, neither or both. I hope the antibiotics are contributing!!

Be well WW

Well, though you can't say for certain, it does seem very likely. I know that people said all sorts of things about me, like I had been misdiagnosed or, not understanding SPMS, its just a good period, and much more.

You will probably find walking the last thing to improve because your feet are the furthest away from the CNS, so try not to worry too much about that. Just look forward to the day when you can change your avatar.

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

WW, it has been a very long time since I have posted here.

This is my second try at this - I hit the wrong button and lost my masterpiece!

You have seen "whispers" of improvement. That is how they come - delicately, timidly, cautiously. Then we get slammed back to step one and a half. The half is important - take note of it. It will be back one day.

Please don't expect everything to stay when you get a small "tweak" of a good thing. It will be five years for me next month. It has been wildly up and down, with up being triumphant in the long term.

Rica

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2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

Update. Went on holiday to the sun which meant I had to stop doxycycline and was unable to obtain rifampacin. Developed urinary infection which naturally knocked me back. That was 3 weeks ago- walking deteriorating and started pulse last night, Interestingly migraines have kicked in again whilst off doxy/azithro. Looking forward to being able to stand/wash sing and change a light bulb at the same time in the shower again!

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SPMS 20years. EDSS 6.5

Funny, funny! Eventually you probably will be capable of doing all those things at once, but will be slammed with great ceremony way back beyond step one!

Rica

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2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

Change a lightbulb in the shower? I'm glad you can't because its dangerous. You might electrocute yourself.

I'm also glad you couldn't obtain rifampicin for your holiday: if you want to take it, and it might be good thing to do, you have to stick with it for a few months, not just three weeks. You are a medical doctor so you should know better!

Sarah

However, thinking about it, it would have been a good thing to take as an alternative so long as you had kept away from it for a few months before starting again.

For instance, you could take it for a few months before going on intermittent therapy, but then you would have to go back on doxycycline because stopping and starting rifampicin is asking for resistance to develop.

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.