MS survey help
Jim and I have batted the idea of beefing up the survey questions to make it possible to evaluate MSi symptoms/imrovements a little more precisely. The ldner.org site did surveys of people using the ldn and had people self do edss scores. The nice thing about that is it is familiar.
Or we could create our own vehicle for evaluating MS symptoms. We had a thread a year or so ago on this but Jim asked me to gather the information now for a revised survey and I'd like to tap the collective wisdom here after so many of us are a year or more into it and see what we can come up with at his point with this experience.
Here's the ones we had before. I imagine these as having a scale of ability something like the NARCOMS uses such as
Button a shirt 0 no problem 0some difficulty 0very difficult 0can't
The person would "toggle" the right one.
These are the questions we have so far as good candidates
for legs:
I can slide my heel from my left leg down the right leg from knee to ankle (without using hand to pick leg up) note this is a standard neuro test
ditto other leg
I can hop on my right foot
hop on left
stand for 5-10 seconds on right leg
stand for 5-10 on left
I can walk on my heels
I can walk on my toes
an ambulation scale of some kind suggestions for a very measurable one? I think linking EDSSi and self scoring would be good here personally
for arms:
button shirts
cut meat
write for how long before rest is needed
pick up a penny
Ok what else should we have in our survey specific to MS evaluation? we want measurable ways to evaluate our changes in function
marie
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OK so start adding in now
marie
On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.
"Color out side the lines!"
Of course, these things are all going to be variable, according to how stressed or tired you are, or in my case, how hungry I am. Also, for anyone confined for the moment to a chair, arm strength is very important, because the stronger they are, the more independent you are, so the appropriate exercise is very important.
(On a personal note, when I saw my neurologist about three months before diagnosis, I could only wear absolutely flat shoes, now I feel more comfortable and actually walk better on heels between 1 1/2 and 2 inches. These also stop a slight swelling I get on my ankles and tops of feet.)......Sarah
An Itinerary in Light and Shadow Berger.Started the Wheldon regime in August 2003, due to very aggressive SPMSi. Moved to intermittent therapy after one year. In 2006 still take this, two weeks every two months. EDSSi was about 7, now less than 2
Shoes: Like you Sarah, shoes are a marker for me. At the moment, I wear nothing but sneakers. I can't wear any flat shoes like thongs (I'm talking about flip flops here, not underwear!) as they just flip-flop straight off my feet, especially the right one. The same goes for slip-on shoes. I also can't get around in bare feet as I end up stubbing the toes on my right foot or tripping myself up (this means no open-toed shoes either). Maybe the msi survey could include a question about footwear?
Hands: As all of us here are using computers, maybe it would be a good idea to include a question about typing and using a mouse? I also notice how my hands, wrists and arms are feeling when I turn on taps, pick up saucepans and reach for items from the pantry.
Balance: My neurologist sometimes gets me to stand with my eyes closed and I seem to lose my balance almost immediately so I have to be careful when closing my eyes in the shower! Not sure how easy it would be to self-measure balance for the survey though...maybe standing on one leg with eyes open then closed and comparing?
Time of day: I wonder if it would be valuable to indicate the time of day that the survey is taken? As you point out Sarah, there are many variables involved. I know that there are some things I could do when I first get up that would be impossible after a few hours of moving about.
Good luck with the survey Marie!
Vanessa :o)
On Wheldon protocol since July 2006 for SPMSi (EDSSi=6 to 6.5).
Vanessa :o)
On Wheldon protocol since July 2006 for SPMSi (EDSSi=6 to 6.5).
Hi Marie! Another thing that I would be interested in would be comparing motivation/activity level....say every 6 mos. or so...? For example, when I was first dxi'd with msi I was still able to venture out alone shopping, hair salon, visiting friends, you know, basic common activities. I would weave a bit when walking, but I was fully independent. As things progressed, I became more dependent. Yesterday, with a cane, I went out alone to a salon and got my hair done--first time in nearly two yrs. It was challenging, but I did it..and I just finished a pulse 5 days ago!
KK2 :)
Wheldon Protocol for rrmsi since Oct '05. Added LDN 4.5mg qhs Oct '07. All supp's. Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008. Currently: Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.
KitKat, yes, motivation, that's a good one. It probably applies to far more than just people with MSi, though: look at Jim's kitchen. I hated the period when I was so dependent, though, and am much happier that now I am not. I hated it when people would come up to me in the street and ask if I wanted some help. It was nice of them, but I hated to look as though I did need help. Now, even if I am using a trekking pole, I have the ability to look as though I am perfectly alright. Oh, except when I was going to visit someone down the road, wearing completely flat velvet pumps, and like Vanessa, I managed to kick one right into the middle of the road. Luckily someone did come to my aid then, because I can't walk with bare feet: well, one bare foot......Sarah
An Itinerary in Light and Shadow Berger.Started the Wheldon regime in August 2003, due to very aggressive SPMSi. Moved to intermittent therapy after one year. In 2006 still take this, two weeks every two months. EDSSi was about 7, now less than 2goodness cinderella!
Thanks everyone fo rthe input this will be quite the evaluation tool
marie
On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.
"Color out side the lines!"
I can offer some additional areas to cover...
urinary disfunction difficulty emptying bladder contents entirely sexual disfunctiona delicate topic but something to ratevision problemsdouble vision, blurrinessspeech problemsslurred speech, pronunciation
Those are some of the main things that come to mind. Of course, there are other things, but not everyone has the same symptoms so it could vary a lot. Just some possible areas to cover...
all my best
John
RRMSi/EDSSi 4.5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazole) since 04/12/2006
best, John
RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day
Marie, I think this is a great idea, but I have a comment for newbies looking at this thread. Please don't mistake improvement of function as an indication of the effectiveness of antibioticsi. In my mind, the only way to evaluate that is arresting further disease progression. The neurological damage that has already happened became a separate issue as it occurred. That damage involved demyelinationi, but sadly, may also have involved damage to the nerves themselves. Antibiotics don't fix that. BUT, the fantastic thing is that once the damaging forces are squelched, the body can repair itself. In the past, the nervous system was deemed unable of any regeneration, but now we know that it does happen. Also, remyelinationi happens. Just how long these processes take and to what extent they happen is the huge unknown frontier being explored in the subject matter of this thread. Good diet and faithfully sticking to the supplement regimen can maximize the repair possibilities. Everything I've just stated is only repetition of points made by CAPi veterans in other threads on this site. All that being said, what a joy it is that it's happening for our friends on cpnhelp.org! We're looking forward to seeing the results of the coming survey.
Joyce~caregiver and advocate in Dallas for SteveJ (SPMSi): started CAP 8/21/06
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Very true, Joyce. When I started antibiotics my disease was very active and therefore very toxic, so as soon as the toxicity was cleared I regained many functions which were not due to long term neurological damage, most noticeable here, to the outside world, being speech improving very rapidly. That was only because it was a very recent occurrence. Any urinary problems I might have had were also very slight but also improved rapidly, the same with a slight blurring of vision when tired, also, in my case due to the toxicity. I had an eye test shortly after starting and my eyes were perfect.
My arm also regained some function fairly quickly, but this was nothing like complete for nearly two years. My walking, even after three years is far from perfect, although slowly continually improving. This is all due to regeneration of the nerves, which is only given a chance of happening due to the removal of active infection. I get the impression that many people think they have to continue on full-time abxi until they are completely without MS symptoms. This isn't the case at all. I stopped after one year, and changed to doing intermittent treatment, yet I still continued to improve even when not taking abxi. With time, this became slower, it is bound to, but it is still continuing. I do have a good diet, I always did, and I do stick to the supplement regime, although slightly less now than before. When I first started, I thought, being of an optimistic nature, that I would be right as rain within the year. I soon came to realise that I wouldn't, but this is in no way due to the antibiotics not working, because they stopped dead the progression of the disease. Everything else is up to what I am capable of......Sarah
An Itinerary in Light and Shadow Berger.Started the Wheldon regime in August 2003, due to very aggressive SPMSi. Moved to intermittent therapy after one year. In 2006 still take this, two weeks every two months. EDSSi was about 7, now less than 2Sarah, Joyce
You both make very good points that I agree with. One question I would pose (probably more directed at Sarah's comments) is how does one know it's time to stop taking antibioticsi? Based on what I've read here the main criteria seems to be that one still experiences a response or die-off reaction to them. I would also posit that those still on them after a year are probably doing so because they still have that reaction. I would also thin that another possible sign of continued infection is porphyriai. If you are still getting prophyria, there are still active RBs in you to clear out. Would you agree with this? Any other clear cut signs one could use to gauge whether or not to stop anti-biotics?
all my best
John
RRMSi/EDSSi 4.5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazole) since 04/12/2006
best, John
RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day
Yes, all great points and its a great question John and to add to it - is that one year of abxi once you start a full pulse of flagyli as I am not there yet. So when I get there would it be one year from that date to start interm. treatment. I am going to like that "polio" patient Marie described and do not expect full recovery but hope to stop disease progression and get my brain power and energy back.
On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDNi 2004
5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.
A particular area of all this is very fuzzy for me, and that may be because it's a fuzzy issue. Balance---is compromised balance a long term or short term issue? It's probably another one of those things that differs from individual to individual. Of course, you can always hope it's short term. Joyce
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Thanks Guys th3se will be taken into consideration as p[ossibilities for the measurable survey questions. We hope to have a lit that a person can easily qantify their progress
marie
On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.
"Color out side the lines!"
Note for Marie's survey update "I can type a 29 word paragraph with less than 4 typos............." yes, no or Call Miss German the typing teacher to see if she ever could type-answer NO never, gave her 2 D's. The only thing our honor student could not do. sad.
marie
On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.
"Color out side the lines!"