Always an Anecdote

[SarahLonglands]

Undoubtedly there are subtypes of MS and bacterial is just one of them. Think of hepatitis- there is viral, toxic, auto-immune, etc. It sounds odd but those with bacterial MS may be the lucky ones as a very effective treatment appears to be available!

Daunted, you know what I was diagnosed with at first? Congenital spinal stenosis, most common amongst achondroplastic dwarfs! I would look like a giant to a dwarf, I think.

Now, I went on a picnic at the weekend, to the big outside: beautiful chalk downland, perfect for flying kites. Whilst the others in the party were busy playing hand ball I snook away to walk up to the triangulation point, using one trekking stick. This really made me feel like my old self, just me and the outside world. I did trip on a big flint, coming back down, and ended up sitting on my rear, but the terrain just made it feel like I had landed on a feather bed. It is always easier to climb up a hill than come back down.

I had just finished my most recent booster dose. I suddenly decide I couldn't stick the metro/flagyl any more, because it always makes me feel so tearful and depressed and tired, so this time I tried tinidazole, a newer macrolide, because it is supposed to be kinder to take. Well, it is! I didn't cry once and felt much less fatigued. Of course I can't say if people still getting rid of the pathogen will find those reactions any better because I am past that stage. I stopped having herxheimer reactions after about the third or fourth go. That is it now for three months, but I will definitely be using that in the future.

Sarah

[mrhodes40]

A picnic and a little trek off by yourself? man. That's really terrrific. Thanks for the update. These little inspirations are a real treat! It's like a wonderful fairy story that you ask your mom to read again and again, only this is real.
Blessings
Marie

[Katman]

Marie has been very busy. I am sorry to say- I have not. Flagyl- day 6 is where I am and have a really rotten cold in addition. Double whammy! Day 6 comes after day 5 when you finally stop taking that horrible, wonderful stuff. It is so easy not to think about the mirror image that begins right after those 5 days. At least that is the way it affects me. But I must add, it sure is worth it. I am certain to feel better with each succeeding day.

This morning I had a visit from the person to whom I gave my cane. Interestingly, she is a patient of Dr. Kaufman in Charlotte, NC .At my suggestion, she will speak to him about abx, having already had the usual scoffing from her local neurologist. She has been on Betaseron for several years. She met me a few years ago and has gotten worse but I had caught up and passed her in the interim. I was undiagnosed at the time. What I said about making a great noise is something I have to remember on days like this.

Also, my niece's brother-in-law about whom I only learned last week, is in a wheelchair and very depressed. The clan's home base is in Texas but several close family members are MDs in NY and are openminded about abx. I am really hoping that something comes of this. What an awful place to be.

Marie, thanks for all you interesting postings. They are invariably instructive and helpful.

Sarah, I am so happy you are back. We have missed you. Incidentally, I had a good chuckle over your change of avatar from 1-eyed pointy-head to smiling sunshine. It is certainly indicative of the celebration of an MRI with "disappeared lesions" Congratulations on your continuing progress. It is so exciting.

[SarahLonglands]

Since I am now only taking booster doses every three months, I thought I should report any changes as I notice them, lest I completely forget.

Two days ago I cut two rather thick, hard, museum quality window mounts or mattes as I think they are called in the U.S. I have not been able to do this for about three years. It was hard work because you have to press down very firmly and not wobble about. I felt myself losing pressure about 5cm from the end of each cut, but with perseverance I did it and the result was perfect, otherwise I wouldn't be posting this, being something of a perfectionist. This, together with now being able to lift my right arm high enough up behind my head to tie up my increasingly long hair out of the way whilst working, has made me very happy.

Katman, I'm glad you had a chuckle over my change of avatar!

Sarah

[SarahLonglands]

Well, since winter is nigh upon us, David persuaded me to keep the booster doses at every two months until the spring, just in case another CPn infection should wing its way toward me and take up residence.

So................
I finished my latest dose last week and found myself so busy that I completely forgot to post. This is the first booster dose where I have just taken tinidizole in place of metronidizole. Last time I swapped over part way through and the change in mid stream made the comparison between the two that much sharper. This time I found it still to be a preferable drug to take and will stick with it, but I lost the euphoria I experienced last time which was obviously due to the immediate comparison of the two drugs. I certainly felt less tired and less tearful, so that is enough, sine it only has to be endured for five days. Apart from this, I had no difference between taking any of the abx and not taking them. I haven't for over a year. Now, in the same way that my disease was progressive, with the odd relapse thrown in for good measure, the reverse is now the norm. My improvements are progressive, with the occassional leap upwards. I certainly have more stamina now than a year ago and can therefore face painting on an easel, rather than just sticking with watercolours which necessarily have to be done on the flat. However, I have made a big move in deciding to stop oil painting and move over to acrylic painting. Still on canvas and using the very best quality "Golden" acrylics from the U.S, but it will take a bit of getting used to because the paints dry that much more quickly. I made this decision because of my lavish use of organic solvents over the years. I think there is little doubt that they made my disease worse. I was reluctant to admit this but the evidence, I think, is overwhelming. Now I will only have to come into contact with them briefly, whilst varnishing and I can easily use a mask whilst doing that. So, a new life for 2006!

Sarah

I will also be strating a blog on CPn Help, which will include various musings and also a slightly eccentric fitness regime.

[mrhodes40]

Sarah said"Now, in the same way that my disease was progressive, with the odd relapse thrown in for good measure, the reverse is now the norm. My improvements are progressive, with the occassional leap upwards"

Oh my gosh. Still improving??? See, it is true, no one knows how much better we can get when we stop the advancement of the disease.

This is fabulous news. What an inspiration to everyone. Thank you for posting it!
Marie

[SarahLonglands]

The last week of January, 2005, so nearly two and a half years since my diagnosis of very aggressive SPMS, and very nearly three years since my right arm almost completely gave out, leaving me unable to do up the buttons on my shirt unless I struggled with my left hand for half the morning. Forget shoe laces. Until the actual diagnosis I was living with the vain hope that it would just get better. After all it had happened before, twice, but a few weeks later it was completely gone. This time, though, the weeks passed by and there was not the least improvement. Far from it: things were going wrong in other ways and quite rapidly. Much of this I was completely oblivious to, which maybe, if there had not been a way out, would have been the best thing for me. Like someone who has a bad stroke who is unable to pull out, at least I would not have really known much about it. Other people would have suffered but not me.

David's mind though, went back to his early student days and the slightly later days when he was studying neuro-pathology at Oxford. Then he met people in the last stages of MS and they always appeared to him that chronic infection was involved somewhere. But what? People had various ideas over the years but nothing had ever been proven. Chlamydia Pneumoniae had not even been discovered. That happened after he started work here in Bedford and I remember him telling me a few weeks ago of the day they first cultured it in his lab. At that time, in the 1980s it was only thought to be responsible for low level community acquired pneumonia.

I developed my first very benign MS at that time. It didn't really trouble me for years. My eyesight was perfect, various numbness's would come and just as rapidly go, then my right arm gave out for the first time. Now I had to do something, so I first went to my GP. She was on maternity leave so I saw a former member of the practice, brought back from retirement. Not looking in my notes where he would have seen a drawing of my left thigh, with a contour line showing where the numbness was when I saw a previous GP, when I was not long out of college, this man blithely said it as a trapped nerve, so come back in thee weeks if it was no better and he would arrange some physiotherapy. That was no good to me, so I went to see an osteopath. When I went for my fourth appointment he told me that I had better see my GP before he did anything more. He had a book about MS open on his desk. I was horrified. It couldn't be MS, not me, he was being silly, I was so healthy apart from my arm. So I went to see the physiotherapist of the local football club, who said it would probably be better by the new year, and it was, of course. But this time, in the summer of 2003, the weeks were dragging past.

The week following my diagnosis David searched and searched for information, would maybe have started me on doxycycline anyway, but then he discovered the work going on at Vanderbilt and well, it worked! So today I am not, against the expectation of "my" neurologist, sitting like a useless lump in the corner of some nursing home, or worse but I have started work on two big acrylic canvases, 2 x 3 feet and nearly 3 x 4 feet. My mind is sharp and clear and thinking up lots of new ideas for painting, which I can now do, upright on an easel, for hours at a time.

Set against the taking of the antibiotics and adjuncts, though, both of which, I cannot express too much, are needed, you need to help the process of recovery yourself as much as possible. You can't just sit there and wait for improvements to happen, as I am sure I have said somewhere before. I have an airwalker in one corner of my studio, which I use at various points in the day, just for a few minutes at a time. This helps with the stiffness I can still feel if I have been sitting or standing in one position for too long. I have found by trial and error that this suits me better than doing it all in one go. I have taken to listening to Cuban dance music on my headphones whilst doing this, because you can get into a good rhythm and the minutes go very quickly. Variety being the spice of life, I alternate this with scooting or cycling around the block, or the park, which is only down the road. Both help with any residual balance problems and once you get going, the faster you move, the better you can balance. I can't do this for too long, yet, though, partly because I panic about getting home, would you believe, but also because it tends to tire me out for a while, which hinders my painting. Likewise with my cello. I reckon it is good exercise for the hands, fingers and arms, but I can't do it for too long for the same reason. I am gaining strength all the time though, so before long I will be able to do more of everything for longer, without having to choose between them. Of course, living in a high ceilinged three storey house also gives one quite a bit of exercise before you think of anything else. We both have studios and studies on the middle floor, but everything else is either up or down. Perhaps I should wear a pedometer just to see how far I do walk in a day!
One other thing I know I have said before is that there is a tendency to put out of your mind the really bad periods, or in fact, as in my case, jus to not remember them at all. There can be a feeling that you are not making as much headway as you had hoped. In this regard I think a journal can be very helpful. I can't talk! I was keeping one at first, then got annoyed and deleted it. I know then that I wasn't thinking about posting my experience to maybe help other people, but now I wish I hadn't done that. David does remember everything about how bad I was, so he can help me in that respect. I think I was so bad, actually, just before starting treatment that I wouldn't have recorded anything terribly accurately......Sarah

[SarahLonglands]

Again taken from the CPN site:

for Marie, some solid information. When David and I first met I could walk in the hills all day, say 25 miles and be tired but only nicely tired so that I would sleep well. I could cycle three times that distance easily. This would have been in 1994. By 1999, when I first started to show signs of progression, we went on a walking holiday in the Carmargue and the Causse Noire. I suddenly found that it was really hard going, dragging my feet, especially the right one, no energy even to walk five miles, scared stiff about coming down the steep and narrow paths. This had never bothered me before, I had always been fearless. I would walk for miles in London, rarely taking the tube or bus. For KitKat's information, when I was studying at the Slade, it is just round the corner from the British Museum, but I used to cycle in from south of Clapham Common, about eight miles through the traffic.

By 2001 I was really struck down. At my worst I had to hold on to David just to get to the corner shop, about 50 yards, then I had to support myself on the shelves. I did pull back a little from this, but to walk downhill to the river, about 3/4 0f a mile was after that the best I could manage. A little while before I had been given a diagnosis of congenital spinal stenosis by an orthopaedic surgeon and I chose to stick with this because I had a 30 percent chance of getting totally better. I could still cycle a reasonable distance at this time, but then vertigo started up so I couldn't even do that: I kept not turning corners quickly enough and crashing into hedges. Slowly my walking was getting worse again, until it was back to the 50 yards thing. Then finally my right arm gave out, so I had to see sense, and a neurologist. Yes, I did walk back from the hospital that day, but in three stags, with long breaks between, David's arm at least half the way and other people's arms after that, then the last bit a lift from my hairdresser. I was wiped out but obstately determined not to give in.

But now it is 2006. Today, although it was barely above freezing, I decided to go out and see how much I could do before getting too tired. I took my little scooter, like a full-size child's scooter with pneumatic tyres and went a distance of somewhat more than two miles both scooting and walking. I wasn't at all tired when I got back, and was not dragging my right foot behind me, which is an improvement. Better to do that without fatigue then slowly build on it, I think. We live at the top of an admittedly not very high hill, but when you always have to climb the last bit, you feel it if you are tired. I feel that I have much more stamina recently, but crowds of people bother me. Also if I cycle, I can go farther, but a soon as I stop, I start to panic and can't start again.

I walk better when I am by myself for the same reason. I could probably bumble about for hours by myself, taking things at my own pace, but having a friend alongside can completely throw me. I'll get over that, but the main thing is the strength and stamina is coming back. I can do everything for longer and if I do get tired, a rest of about half an hour and I am ready to go again. Warmer weather should be coming before long and yes, I should keep a record, I'll try. I am doing very much better on the airwalker, though, with my Cuban soundtrack! I used to be very shaky and wobbly when I finished, but no longer. I am standing taller as well, with no tendency to stoop or hunch up my shoulders. Before long I will be hill walking again.

I must admit that getting back my painting abilities have often taken priority, they had to, but I've got all that back now, so watch out!

Sarah

[SarahLonglands]

Well, I finally finished my first two totally acrylic paintings, having decided to give up oil painting to avoid organic solvents. They measure 24" x 48" and 42" x 36" or thereabouts. They took a bit longer than normal because the medium took bit of getting used to, but here they are, "Vessel" and "Cavern". Funny thing, but I started out relying a lot on the rest David made for me to attach to my easel when I first started going rapidly downhill, just before it got so bad that I couldn't paint at all. When I first started doing these paintings I was nervous at having a big white canvas stuck in front of me again rather than a sheet of paper laying on the table. It had been three years since I had been able to do anything like it. My arm was unused to the position and really needed the rest for support. Now, though, although I will use it for closely detailed work I more often just rest on it with my left hand while painting with my right. I had intended to gradually raise the height to get me used again to painting at eye level, but in the event, I didn't need to. If I do paint all day, though, which I can easily do, I feel it when I come to eat my dinner.

Sarah

[MacKintosh]

WOW! Sarah, I'm so glad you've (anecdotally, of course) recovered so well!

[mrhodes40]

Wow! THANKS FOR POSTING What is a scooter though? is it a motorcycle? Just curious
marie

[SarahLonglands]

Hah, a scooter has two wheels and handlebar but no seat and no engine. Well, some do, but mine doesn't. I sometimes wish it did when I am coming back uphill. It does have pneumatic tyres and brakes, though, and even a small wire basket for the front. Its heavy enough not to bounce round and hit me in the ankles when walking across the road, which my micro scooter did!

Sarah

[remnants]

Thanks for sharing Sarah...both your art and story(commitment) are inspiring!

-Cindy

[SarahLonglands]

Here is a picture of my "Puky" scooter for Marie!

[MacKintosh]

How cute, Sarah! And to think even that was out of the question when the MS took over! My greatest fear was ending up in a wheelchair, I have to be honest. It was the thought I had when I swallowed my first two antibiotics in the battle to beat this thing. "I will not end up in a wheelchair", started my abx journey. Creepy thought now.

Today, I ran up four steep flights of stairs in rather a hurry. MS never crossed my mind.