Anecdote's personal treatment regime

Tell us what you are using to treat your MS-- and how you are doing.

Dr. Powell's address

Postby slmccra » Thu May 12, 2005 5:38 pm

Hi Sarah, my name is Sherry, I don't have ms but my son's father was just recently diagnosed with it and he would like to try the antibiotic route first (instead of avonex or rebif) but we aren't having any luck at finding a dr. that will prescribe them.

I saw in an earlier post that your husband recommended Dr. Michael Powell in Sacramento, CA and I would like to know if you would please let me know the address and/or telephone number for him.

If you or anyone else that reads this knows of a dr. that is closer to Los Angeles, CA their information would be greatly appreciated as well.

I am so very happy to hear of your continued progress with your treatment, it's because of you and the other people that are having positive results, that we feel more hopeful than hopeless.

I wish you all the best and thank you for taking the time to read this and for throwing anymore information my way, this site is absolutley wonderful!!!

Thanks again,
Sherry
:)
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Postby SarahLonglands » Fri May 13, 2005 3:30 am

Hi Sherry, I will send you a PM straight away. I really don't think there is anyone nearer to you, though!
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Re: Dr. Powell's address

Postby Daunted » Fri May 13, 2005 11:27 am

Sherry,

I PMed you the information for Dr. Powell.

The drive up the I-5 isn't all that bad, considering what you'll be getting in return!

Take care and feel free to PM me with any questions, I'm familiar with both CA and Dr. Powell..
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Nearly two years update!

Postby SarahLonglands » Wed Jun 01, 2005 12:21 pm

I will shortly be starting my next booster dose but I thought, since I don't really notice any difference between when I am taking the antibiotics and when I am not, I might as well post now. Sorry if it is a bit long, but I am just getting things sorted out in my mind about how come it took so long or me to realise what was wrong with me. If the truth be told, I am almost glad, because what could have been done twenty years ago, a year out of college and with my whole life ahead? At least I didn't have to spend all that time worrying about it, and I am pretty good at worrying.

In my first posting, pages back, I said that I must have had the disease for about fifteen years. In actual fact it must have been longer, because the first symptom I went to a GP about was when I was 25, so now over twenty years. This was something I had forgotten about completely until I saw my old notes from back when everything was written down on pieces of card and clipped together. I went because my left thigh had been numb all down the outer edge and my then GP had even drawn a detailed two colour picture of said thigh, showing where I felt the numbness. It went away, as he said it probably would, after a couple of weeks. My next symptom, a then temporary uselessness of my right hand and arm was several years later, lasting about a month. I had moved by then and this GP was someone brought back from retirement as a locum tenens while my normal doc was on pregnancy leave. He didn't ask me about anything else, but just said it was probably due to a trapped nerve in my shoulder, so come back in a month if it wasn't right and he would organise some physiotherapy! A month - what was I supposed to do for that month before even starting treatment, I thought, so I found an osteopath. A month later of course it was totally better, so I didn't even bother going back to that delightful man. This happened again, and I, thinking he must have at least been right about the trapped nerve, went to a man who was a physio for a local football team, and again, better in three weeks. I must admit that it did cross my mind at some point, that I had MS but I just didn't want to entertain the idea, so when I was totally well for most of the time, I could easily put it out of my mind. Even the CRABS weren't available then, so what else could I do? Several years on again, I met David. I had not had anything go wrong in the intervening period that I can think of. I remember that we both went on a walk which involved a couple of miles of lumpy, stony beach where I found myself tripping a bit on the stones, which was unusual for me, but I put it down to the miserable, windy, rainy Lancashire weather. We then reached the salt-flats, which was fine. Then up and down a few hills, no trouble, so put that out of my mind again. I did nearly get blown away on the top of Warton Crag, but it was jolly windy and I am not a heavyweight.

There followed after this a few patches clumsiness: falling off kerbstones and such like, but I always put it down to being a silly thing to do, to walk right on the edge of the kerb anyway. I was not affected at all at this stage with how far I could walk or cycle or anything. Put me on a bike and I would just keep going all day and not feel any more tired than the next person. David had been a caver before he met me and I kept on saying that we should go, but he kept making excuses. As it happened this was because he was worried that there was something wrong with me: I seemed too clumsy in certain things for someone who didn't look clumsy at all.

Then in 1999 I had just got over a bout of 'flu, when I had to do jury service which ended up as a three month stint. I was living in Bedford by then and the crown court was in Luton. I had no trouble walking the couple of miles to the railway station in the morning, in about 20mins, but the trouble came when I had to come home. There were four of us from Bedford and we often ended up running for the train to come home, but could I do that? I just couldn't make my legs move fast enough. I also had developed adult onset asthma, which needed an inhaler to stop me coughing all through the interminable list of witnesses. I had actually coughed for years in a more minor way, but not any more. By the end of the year I was really having difficulties: on a walking holiday in the Auvergne and the Causse Noire, David was leaving me trailing way behind. I could manage to scrape up somewhere eventually but coming down was anther matter. Those steep, narrow, twisty paths which formerly would have worried me not at all suddenly petrified me. You don’t realise how far you have managed to climb until you get to the top and look back. I told myself not to be so silly, I was behaving like my mother, but once David was far enough ahead I would often resort to coming down certain parts on my backside. A few months later I had developed severe foot drop on my right side, so David persuaded me to see someone. My GP sent me to an orthopaedic surgeon. Result: ‘obviously congenital spinal stenosis, a perfect example.’ This suited me because he also told me that there was a 30 percent chance of getting completely better. Being an optimist, I was bound to be in that 30 percent and ignored what I later found out about it being most common with achondroplastic dwarfs! Well, ‘most common with’ doesn’t mean ‘only seen in’, after all. David was accepting of it because he didn’t know at the time anything about CPn being implicated in MS. His last experience of people with the disease dated from his student days and later on when studying neuropathology at Oxford. These were really severely affected people, of all ages. The youngest was only 26, completely paralysed and fed by a tube into the stomach. So obviously he didn’t want to think, after only a few years of marriage, that it might be that. He had only seen MS from the worst viewpoint and I was about to reach there without even knowing I had already gone down the nursery slopes. This doesn’t happen to everyone by any means but my particular MS suddenly became very aggressive, probably because of one reinfection too many. It really began with full force in the summer of 2001, when I came out of the central post office and realised that I couldn’t walk home: a distance of less than a mile. I wasn’t thinking at all clearly because I thought that I should phone home and get David to bring my bicycle down so that I could cycle back on it! Obviously I couldn’t but I did manage to stiltingly walk back using it as a kind of frame. I got somewhat better from that, but then started an inexorable progression downhill, until two years ago, after insisting that ‘it’s alright, I’m getting better’, just once too much, I agreed to see a neurologist, had an MRI scan, and the rest is all documented here already.

At the end the disease was progressing so rapidly that I really should have admitted defeat and thought seriously about wheelchairs and suchlike. Not that I would have been able to use a manual one myself, with only the use of one arm. But here David, jolted out of his fear and dread, set to work, firstly recalling that in about 1880, when the French neurologist Charcot first accurately described the disease, he also posited the opinion that it seemed to him like an infective disease. He then looked a bit further and found the work that Sriram and Stratton were doing at Vanderbilt, did a bit of research in his laboratory and brought me back the doxycycline……………………………………


Well, this might be a bit longwinded but it makes a change from my normal 'this, that and the other' finished off by my latest little cork catching trick or whatever.

When people with secondary progressive disease were first trialled for Campath, they showed some improvement at first but before two years were up they all started progressing once more. My two years are nearly up, but I am still showing improvements and no sign of progression. And my finishing party trick? Well, I can now put both hands fully above my head and keep them there. The right still not quite as fluid as the left, but two years ago it was absolutely useless.

Sarah :?
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First Flagyl

Postby BalsaBoy » Sun Jun 05, 2005 11:51 am

Hi Sarah

I'm starting Flagyl today. Do I take one a day for a week?

Jim
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Postby SarahLonglands » Sun Jun 05, 2005 3:28 pm

Hello Jim,

Well, it's a bit late in the day to think of asking, even later now!

David suggests three tablets a day for five days, if you can stand it, but I couldn't at first, so would tend to stop after three or four days.:( Someone else I know only took one tablet for one day the first time, so really it is up to you: just don't try to be strong and macho for the hell of it, thinking that you can do better than these wimpish females. Remember your beetroot coloured skin with the sun and the doxycycline. He often now recommends not even starting for six months, or even more, and certainly he prefers people to write to him before starting! :?

Sarah
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Beetroot skin

Postby BalsaBoy » Sun Jun 05, 2005 6:13 pm

Thanks, my skins even more beetroot coloured now with embarrassment. The time just crept by mostly due to a car crash I was involved in recently, dealing with insurance companies, etc. I thought I'd remember what he told me when the time came and was too ashamed to admit I'd forgotten. However, I took one earlier tonight and felt quite good. I'll email David asap.

Jim
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Postby SarahLonglands » Mon Jun 06, 2005 3:22 am

I'm glad you feel OK and hope the car crash wasn't too bad. Sorry if I was a bit short. :(

While I'm here I might as well post a bit more on my latest update, having managed to both surprise and embarrass my husband:

We both do the Times "Winning Move" chess problem every Saturday. A couple of years ago it would take me days, and even then I often couldn't see something that was glaringly obvious, until it was pointed out. Yesterday I got round to having a look at this week's. "Have you done it?" I said. "No, I can't see it. It must be one of those that doesn't end in a clear checkmate", was the reply. So I had a look and it took me about two minutes to do, a case of sacrificing the Queen then moving the Knight out of the way to put the King in check by the Bishop. No way out, so Checkmate. Simple! So I had David both completely surprised, but pleased as well. :)

Sarah
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Postby Daunted » Mon Jun 06, 2005 5:47 am

Sarah,

Well-done. I love chess, have played on-line with some friends at times, but have had a bit of trouble with concentration myself.

It reminds me of the old joke of the guy who has bandanges on his hands after an injury, and he asks the doctor if he wil be able to play the piano when they are removed...the doctor says yes and he is thrilled since he couldn't play previously!

E.g., I might ask, Doctor, will I be a great chessplayer when I come off of these antibiotics?

Congratulations on your continued improvement. I am going to post an update soon. I hit six months before the end of the month.
On Vanderbilt Antibiotic Protocol since January
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Flare-ups on metronidazole

Postby gibbledygook » Tue Jul 12, 2005 5:43 am

Hi Sarah,

I was just wondering if you could remember at what point you ceased having flare-ups of symptoms at the same time as taking metronidazole. I know the 3rd pulse was bad for you, did they (the pulses) continue to be bad for many sessions afterwards?

Yesterday I was on my 9th day of my 5th pulse when the burning in my left foot returned to an acute level as did the spasms. My walking has also felt very wobbly since starting the pulse although that may have something to do with the heat. The spasticity has also increased over the last few months. Mmm. One thing has improved and that is the absence of a funny l'hermitte-type sensation in the kidney area of the lower back. This was the symptom that sent me to see the neurologist before my walking became a problem. It is a symptom that had come and gone quite regularly, perhaps every two to three weeks. This has vanished since the first few weeks of May.
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Postby SarahLonglands » Tue Jul 12, 2005 7:03 am

Oh, gosh, I really should have been better at keeping a journal, shouldn't I? Although the third pulse was the worst I did continue having flare-up symptoms for about nine or ten months, I would say, gradually diminishing each time. I still have a minor spasticity even now, but this tends to be affected more by heat, say, than whether I am taking abx or not. I can also lose all the power in my right hand if too hot or too stressed or whatever, but if I sit down and calm down I have it all back within a few minutes. Now, the only things I feel when taking metronidizole are tiredness and weepiness, which anyone can get no matter what they are taking it for.

It is probably a good sign that your l'hermitte's sign is diminishing or even totally gone. Because I had very little spinal damage, for some reason, I was only starting too get this sensation in my cervical spine region before starting the treatment, so it very quickly vanished. I guess that anyone who has damage further down will find it longer before it goes.

9th day! Time for a break surely. 8O :?

Sarah
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.
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Postby gibbledygook » Tue Jul 12, 2005 8:08 am

Thank you so much for your input. The rollercoaster is certainly nerve-racking (ho ho). I must learn patience. Besides I'm not significantly worse than before and my hayfever is certainly much improved and the funny kidney area sensation that has previously announced attacks has virtually vanished. Thus my faith in antibiotics is stirred rather than shaken. Think maybe I should finish the pulse and have a drink! 8)
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Postby carolew » Tue Jul 12, 2005 3:54 pm

Hi Sarah,

Always interesting to read your post. Just wanted to say that I love
cycling too so we bought a tandem bike. It is a great exercise, it is very romantic, is an excellent exercise for my weak leg and for my balance. Maybe you would like it too. I started by renting one to see how I would do. Then, we bought our own and now we go all over our beautiful country (Canada) and we can go quite far because it is a very efficient bicycle. :)
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Postby SarahLonglands » Wed Jul 13, 2005 2:43 am

Hmm, my sister has one and she keeps suggesting we get one. I might try theirs, but I don't like the idea of trailing around behind someone else: I need to be in control. Perhaps I should get over that, but at the moment my main excuse is that we live in an old, tall, thin townhouse without a garage, so where would we put it? Excuses, excuses, we could easily take it round to the back and put it in the cellar. But for the moment, at least I can cycle round the park and get as far as the Italian deli for essential supplies! :)
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.
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