PPMS Newbie saying Hi!!

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PPMS Newbie saying Hi!!

Postby nenebird » Sun Mar 30, 2008 8:24 pm

Got my diagnosis on Friday, 3/28. I long suspected so I was relieved on one hand and scared by the Primary Progressive part.

I had two clear MRIs. A incriminating Lumbar puncture. EP test next week. Dr. has already told me there is 'no treatment'.

So looking at Supplements, exercise, yoga, swimming, howling at the moon, how can get the most out of my life?

How do people keep on with the fatigue? This is just the pits.

My symptoms at this point ranked by how bothersome they are:

butt kicking fatigue
limp when I walk more than a couple of miles. I still walk.
numbness in feet and lower legs
balance issue
some brain fog
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Postby RedSonja » Mon Mar 31, 2008 4:00 am

You just keep going, kid, one day at a time.

You have to learn to change down a gear and take life a bit more slowly. Fatigue stops me from doing all the things I used to do. So I chucked out the wastes of time and concentrate on the important things. And if I want to dig the garden, which I often do, I plan it in 2-hour slices. If we go for a long walk, I make it clear that I want a rest NOW, not in 30 minutes. I let the kids carry the groceries in - they are bigger than I am after all.

After a few years you get used to it. You never get to like it though.
Bibo ergo sum
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Postby ShootingStar » Tue Apr 01, 2008 2:08 pm

[color=indigo]Nenebird, are you in Hawai'i? I have family there (since 1899), just wondered due to the "Nene" thing :D
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Postby cheerleader » Tue Apr 01, 2008 7:42 pm

Hey Nene-
So sorry to hear about your recent diagnosis. It was a year ago this month my husband got his.
He takes the drug Provigil to keep him awake and alert during the day. It was created for narcoleptics, but many MSers have found it to be a life saver in the battle against fatigue.

He also takes loads of supplements and exercises and keeps on going. Life is getting to a "new normal" for him.

All forms of MS (RR, PP, SP) can be helped with good diet, supplements, exercise and a positive attitude. Keep researching on this site, and put your support team together.

wishing you the best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby sweetC » Thu Apr 03, 2008 10:34 pm

I learned to say no.

I'm the kind of person that tries to do whatever others want to help them and please them and make myself feel useful...

but I've had to learn to say NO.

We are just too tired to do everything we used to do.


Also, my doctor gave me Provigil, but I haven't had the guts to try it yet. I'm afraid I'll have even MORE trouble sleeping than I already do. I'm thinking about saving it for the days when I want to go to Disney World.
<Frustration is trying to find your glasses without your glasses.

RRMS since Jan. 2006>
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Postby cheerleader » Fri Apr 04, 2008 11:22 am

Hey sweet C-
Some advice...Don't take the Provigil for the first time on a day you want to enjoy...if you have an adverse effect, it could ruin the day.

Try a half dose on a day you can be at home or relax...take 1/2 tablet in the early morning, so it won't effect your sleep. See how you feel.

My husband takes 100mg. at 10am, and another 100mg. at 2pm. He sleeps really well, and has the energy he needs to work and get thru the day.

Provigil has given him his quality of life back. Hope it can help you, too.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: PPMS Newbie saying Hi!!

Postby benka » Sat Apr 05, 2008 1:52 pm

[quote="nenebird"]Got my diagnosis on Friday, 3/28.

So looking at Supplements, exercise, yoga, swimming, howling at the moon, how can get the most out of my life?

How do people keep on with the fatigue? This is just the pits.


Well, hi
I have PP too (start 1981, diagnosis 2004, stopped working 2004)
I excersize 2ce a week to automate movements before I do not feel the movements anymore in future.
wednesday I start also on yoga
I use colloidal silver (EIS) against spasms
I did aa lot of homeopathy, but it's no longer helpingme.
So I switched to Tibetan medicines 3 months ago.
It gives me more energy
Fatigue I don't have. After ten minutes walking I have to sit for a few hours but that is my body not functioning. I don't call that fatigue. it makes me a bit restless.
Benka
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Colloidal silver caution

Postby lyndacarol » Sun Apr 06, 2008 7:34 am

Benka, in the last month I watched an Oprah episode that featured Dr. Oz and a man who had taken colloidal silver. The man was BLUE! I mean REALLY blue!! I don't recall the reason he took this or how much or how long. Dr. Oz said the color was permanent ("like a tattoo"), and was throughout his body in every tissue.

You had said,
I use colloidal silver (EIS) against spasms.


Be cautious. This was not pretty; he said people stared when he walked through the shopping mall. I'm SURE!!!
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PPMS - there ARE treatments, and more coming

Postby Longing4Cheese » Tue Apr 08, 2008 2:12 pm

Hi, Nenebird.

As you may recall, I am also PPMS, Dx nine mos. ago. I am not taking any drugs (even though all 3 neuros I've seen have wanted me to, but haven't been able to make much of a case), and have been doing the Swank diet since shortly after diagnosis.

I am currently continuing to research PPMS (there are research papers available online) and to look for a neurologist who's a good fit for me. I want to organize a group of PPMSers in Southern California so we can share information, since, as 10-15% of the MS population, we have the least-studied form of the disease, and we need to help each other.

I will try to respond to your concerns here:

butt kicking fatigue

I have a small manifestation of MS-related fatigue, I think. It's sometimes easy to tell that I'm having an inordinate amount of fatigue, and, when that happens, I do my best to REST as much as the situation permits. I am also looking to change my lifestyle to make room for this. I have been working in film and television postproduction, which often entails high-pressure 14-hour days with no lunch break, which are totally out of my control. Thus, I must accept the fact that I need to get a different kind of job. I'm working on it (presently unemployed).

limp when I walk more than a couple of miles. I still walk.

I have the "dragging leg" after about 1.5 miles. It probably appears subtle, but it feels very noticeable. I find that a focused and regular exercise effort makes a big difference. I have been doing short workouts at home with dumbbells, about 4 days a week, and I find that the "spasticity" (stiffness) in my right leg goes away partially or completely after I have a good "leg day" workout (lunges and squats with weight). My fiancee is also doing the women's version of the workout, and she has gotten in much better shape. (She's better about being consistent with it than I am.)

numbness in feet and lower legs

This I do not have at this time. For this, I think, we need progress on the drug front, in neuroprotection and regeneraton. There are promising drugs that aren't too far away from being available.

balance issue

Do you think it's actually balance -- I mean your sense of balance, like the inner ear function or the brain's ability to process inner ear balance issues -- or is it your legs' ability to keep you on balance, because of MS's effects on your legs? Am i making the distinction clearly?

I have had "balance" problems, too, but mine were because of atrophy in the muscles of my foot, ankle, and calf, I think (and/or possibly because of damage to the brain areas that control them -- or the faint lesion on my spinal cord, blocking transmission?). My balance is just fine if I stand on my left (unaffected) leg. I have been concentrating on getting my strength back in my right foot/ankle/leg, with some success, and it has helped my balance, too. I am taking Argentine tango classes, which demand some subtle and specific things from my foot/leg/balance, and I have made definite improvement. I don't know if this improvement is because of muscle building, and if so which muscles (the atrophied ones, or the ones around them?), or if it's from "brain plasticity," i.e. my brain found a way to re-route some of the pathways. However it works, it follows that the best way to retain or regain function is to work at it.

Yoga is a great idea. You may at some point want to do some Feldenkrais also, for specific problems.


some brain fog

I have some days where I feel like I'm slow or spacey compared to my usual, or compared to people around me. This worries me a lot, though I think some of my perception of it is exaggerated because I'm so worried about cognitive changes. I think fatigue makes a big difference, as does diet. If you've been overdoing it and having, say, a sugar crash, you will be especially prone to being "out of it." Some or all of it could be non-MS related. Take it easy.

Overall, keep being active, but take it easy on yourself.

For you as a newly diagnosed pwMS, I recommend paying attention to how much you can stand of anything, whether it's work or heat or noise or how much you can stand reading about MS, and give yourself permission to do something else. This is a lifelong change, and you need to pace yourself for a marathon and not a sprint. If you are like me, you will want answers ASAP, but as you have surely found, there are no simple answers in MS. It takes time.

I'm still reading up about drugs, the old ones (not the interferons, but still some interest in glatiramer acetate/Copaxone) and emerging ones. I am also pretty sold on the Swank diet, with some improvements and supplements, and it's a pretty easy and broadly healthy way to eat anyway. You'll find a lot of people doing other dietary adjustments as well, some very restrictive. For physicians not to deal with diet at all is incredibly narrow-sighted, and they should be embarrassed. On our side, it's something definitely to address.

In summary, I disagree with your doctor: there are treatments. More treatments, specifically for PPMS, are coming. The hard part is sorting through all the information. Take it at your own pace.



Jack Sprat


:wink:
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Postby Lars » Wed Apr 09, 2008 7:57 am

Nenebird,
Welcome to this site. I am going to offer some advice not necessarily approved by my Doc. After becoming more and more fatigued, to the point of uselessness, I went the other way. I started forcing myself to do anything physical that I could, often to the point of utter exhaustion. Oddly I started feeling better. Generally the more active I am, the more I work out and the more I work (I am a building contractor) the better it is. I think there is also a point that you just accept a different form of functionality. By the way the "Blue Guy" Lyndacarol talked about rubbed Colloidal Silver on his skin, not the intended usage.
Welcome and Be Well,
Lars
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Re: Colloidal silver caution

Postby benka » Fri Apr 11, 2008 4:12 am

lyndacarol wrote:Benka, in the last month I watched an Oprah episode that featured Dr. Oz and a man who had taken colloidal silver. The man was BLUE! I mean REALLY blue!! I don't recall the reason he took this or how much or how long. Dr. Oz said the color was permanent ("like a tattoo"), and was throughout his body in every tissue.

You had said,
I use colloidal silver (EIS) against spasms.


Be cautious. This was not pretty; he said people stared when he walked through the shopping mall. I'm SURE!!!


So funny that everybody always remembers the negative info and not the positive.
Look at what regular medicines do
I have been taking EIS for 3 years now.
it works for me.
Archyria only happens when taking silver, which is not silverions.
I 'd rather be blue that having 17 years of spasms by the way.
EIS costs very little, about one cent a liter (1/4 gallon)
The medicine-corporations do not like that
The choice is yours
Benka
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Re: Colloidal silver caution

Postby NHE » Fri Apr 11, 2008 5:10 am

benka wrote:Archyria only happens when taking silver, which is not silverions.

First off, I think you meant to write argyria. Secondly, colloidal silver is not silver ions or ionic silver which is Ag+. Colloidal silver is a suspension of small silver particles in solution. In addition to having silver particles imbedded in your tissues, another thing to worry about is contaminant metals. Most silver sold on the market is not pure. For example, sterling silver only has to be 98% silver. What's in that other 2%? Many metals are toxic, e.g., lead, cadmium, etc. Besides, who wants to be blue?

Some additional links:

Argyria associated with colloidal silver supplementation.
Int J Dermatol. 2003 Jul;42(7):549.

Case report: skin discoloration following administration of colloidal silver in cystic fibrosis.
Curr Opin Pediatr. 2007 Dec;19(6):733-5.

...there are many others as well.

NHE
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Re: Colloidal silver caution

Postby suzie-Q » Mon Apr 28, 2008 1:11 am

Clarification -Only the less pure forms of colloidal silver will cause blueness, and when taken in too big amounts. Interesting that the blue man's liver was in great shape. He may have been taking something else that made blue even worse. And he also used topically on his face. None of this was clarified on Oprah. Making it yourself- you can't get the purity of either the water nor the actual particles (great company in the US- Sovereign Silver:) have the technology for making it so not able to get blue from it, so can't store in body. And it works the best too.


quote="lyndacarol"]Benka, in the last month I watched an Oprah episode that featured Dr. Oz and a man who had taken colloidal silver. The man was BLUE! I mean REALLY blue!! I don't recall the reason he took this or how much or how long. Dr. Oz said the color was permanent ("like a tattoo"), and was throughout his body in every tissue.

You had said, [quote]I use colloidal silver (EIS) against spasms. [/quote]

Be cautious. This was not pretty; he said people stared when he walked through the shopping mall. I'm SURE!!![/quote]
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