Re: PPMS ()

[Guest guest]

Hi ,

I was given the label of PPMS back in 2002, after starting of benign (so

they said) in 1995, and being told it was SPMS in 1999.

Like yours, it was a late, sudden onset of symptoms and since that initial

attack, I have never had any others. I have progressed from walking unaided

to one cane on occasion outdoors (1997), to one cane permanently outdoors

(1999), to a cane and a husband (!) outdoors (2002), to a transit wheelchair

then a self-propelling wheelchair with a walker that I can use from time to

time indoors. Until 2003 I never used a wheelchair indoors and did

" furniture walking " (using the furniture for balance as I walked).

I don't find PPMS at all depressing, I look upon it as a challenge. The BBD

has done wonders for me although my legs refuse (so far) to join in the fun.

All the suggested supplements on the BBD do their little bit too apart from

one or two (i.e. digestive enzymes and amino acids). Amongst other natural

supplements I have tried to no avail are kalawalla, lacticol, shark's

cartilage, and whey. I responded well to a short course of Noni Juice,

another of Aloe Vera, and another of Ambrotose.

Since being on the BBD (started March 2007) and all its associated

supplements, my brain fog has lifted, the MS " bear hug " has gone, fatigue

has gone, slurred speech has gone, incontinence has much improved, bowel is

better behaved, digestion is better, balance is very, very slightly

improved, mood is much better, and most importantly my brain is back!

I do yoga daily in winter, swim daily in summer and have CST (sacro-cranial

osteopathy) every 3 weeks.

My latest discovery is that swimming in a pool with an overdose of algaecida

is allowing me to swim as I did in 1999, walk with my walker, get back up

the steps to the house with only the handrails to help me, stand extremely

upright, have a shower standing up, and zip around (with the walker) for

half an hour. I have no idea why and am trying to find out what is in the

algaecide that is helping. Strange. Half an hour later I am back to

sitting in the wheelchair again but it has been wonderful to feel normal

albeit only for such a short time a day.

We are lucky in that we pretty much know what MS will feel like day to day

whereas with RRMS you never know what is round the corner.

Always have another supplement/therapy up your sleeve and don't give up,

ever.

I encourage you to use my latest theme tune " Stand Up. Don't Give Up The

Fight. " (Bob Marley - Exodus)

Janet

PS Sorry everyone for the long post.

----- Original Message -----

From: trekkie323

I have long suspected that my classification is PPMS, as the

description given on various sites fits to the way it has gone for me.

(sudden onset of symptoms, no remissions, lack of distinct attacks,

relatively late onset, etc).

It is depressing to think that PPMS is my type of MS, because it seems

that PPMS is the one type of MS that responds the least to attempts at

healing, both from the alternative/natural and conventional treatment

methods. Almost all of the healing stories I heard have been from

people with RRMS or even secondary progressive. I don't think I've read

any healing stories of people who had PPMS. Even Ashton Embry says that

the BBD is only shown to work for RRMS. And even conventional medicine

says there isn't anything to help for PPMS.

If anyone has any encouraging words about this, I would appreciate it.

[Guest guest]

Hi Janet,

Similarly, I was first told by the neuro that I had either a benign

case or an isolated syndrome of demyelination. A couple visits later,

my neuro told me I had " secondary-progressive, " which frankly I don't

think fits at all to me (one of the many reasons I am going to change

my neurologists). I pretty much classified myself with the PPMS based

on the facts mentioned previously--sudden onset, but lack of distinct

attacks and distinct remissions. I do have variations day to day. I'm

not sure if I'm a little worse or not since the beginning. I did

actually have remission of the numbness on my left side (which I had

for the first 6 months), but a little after that went away I added a

new symptom of stiffness on my right side, which continues. My

problems with bladder and vision have stayed at about the same level

since the beginning, except for some daily variation as to level.

It's good to know that the BBD could help in PPMS cases, because I

had heard otherwise.

That's cool you met your husband after the MS. I know the MS is hard

on my boyfriend but moreso because of my depression and anxiety about

it....I am pretty amazed at how positive you and others are. I battle

depression and anxiety every day over having MS--and I think that

would be the case regardless of which type I have.

I have trouble enjoying myself anymore. I just want to feel like I

used to. I pray for all of us to heal.

>

> Hi ,

> I was given the label of PPMS back in 2002, after starting of

benign (so

> they said) in 1995, and being told it was SPMS in 1999.

> Like yours, it was a late, sudden onset of symptoms and since that

initial

[Guest guest]

,

�

Your case sounds�a lot like mine.� I followed a combination of the Paleo

Diet, specific carbohydrate diet and low saturated fat diet.� Very similar to

best bet diet overall.� The book called " Healing MS " is also good and it helps

give ideas of how to rest and meditate to improve your mental outlook first.�

Once that starts getting better everything starts to get better.

�

No dairy, beef, lagumes, eggs, no gluten (very few grains-rice occasionally),

etc.�

�

I was very strict with diet early on.� Also, I saw an integrative medicine

doctor and got a prescription for Diflucan (anti-fungal--> yeast overgrowth in

my gut) and Valtrex (anti-viral and neuro anti-inflammatory).

�

Anyway to make a long story short.... I was having the same experience as you

with my neuro, symptoms (including anxiety, depression, along with MS symptoms,

etc) and after following the routine for the last 3 months I feel MUCH

better.� Almost back to normal.� The first thing to go was the anxiety and

depression then the MS symptoms slowly rolled back (with ups and downs day to

day) in the reverse order that they appeared.� Now I feel almost back to

normal except for reduced sensitivity in some areas of the skin.� But now

instead of numbness in my feet for example during a flare I just feel a warm

sensation.� I know that will go away over time too.

Anyway, just wanted to let you know that it will get better.� And I was struck

by how similar your situation sounded to mine.

Good luck.� It will work.� The hardest thing to tackle is the anxiety and

depression in the beginning.� I think the diet changes really help and after

you feel better mentally you will sleep better and you will start to heal.� My

wife and I bought some rain and ocean CDs and that really helped to get into

deep healing sleep mode rather than light anxiety sleep.�

�

Sorry for being so wordy.

�

Regards,

�

[Guest guest]

Hi ,

Just to put it straight I didn't meet my husband after MS, he preceeded it

by 14 years. I was just saying that I didn't need his help as a

cane-subsitute until 2002 when I was needing support on both sides.

We all want to feel like we used to (MS or no MS!). Forget it. Live for

today. Concentrate on what you can still do, not on what you can't or might

not be able to in the future. BE HERE NOW.

Keep smiling,

Janet

----- Original Message -----

From: trekkie323

It's good to know that the BBD could help in PPMS cases, because I

had heard otherwise.

That's cool you met your husband after the MS. I know the MS is hard

on my boyfriend but moreso because of my depression and anxiety about

it....I am pretty amazed at how positive you and others are. I battle

depression and anxiety every day over having MS--and I think that

would be the case regardless of which type I have.

I have trouble enjoying myself anymore. I just want to feel like I

used to. I pray for all of us to heal.