new member

[Guest guest]

Hi Dianne,

My name is and I am fairly new to the groups as well. I have found these

folks to be extremely helpful.

My 10 year old daughter, was just diagnosed with type Chiari two weeks

ago. Since then I have researched all I could on the net and asked questions

here.

Form what I have learned in that time, is that there is really no clear answer

to your question of how your condition will or will not progress. I know that's

not what you wanted to hear, but it does seem to be the truth.

Every case is different. There are things that can aggravate your symptoms,

there are medications and surgical procedures that can alleviate them.

This is an excellent question to bring to the surgeon at your next appointment.

Good luck with that appointment, and with getting all your questions answered

here. This is a wonderful community of people which you will surely discover

soon.

Mom of

10 y/o, Chiari 1, 5-6 mm, no syrinx

[Guest guest]

Welcome Tesa!

Glad you joined our group. This is a great group and much good

information can be found here. I read the posts on site instead of

getting the email. Feel free to ask you questions. We can help you.

hugs,

Debbie J

>

> Hello everyone! My name is Tesa, I'm a WAHM. Four daughters, one

> step-daughter and one step-son. Yep... 6!! I have alot of

questions,

> mostly would just like to see that I'm not really crazy and other

> people have some of the same things going on as I do. Diagnosed with

> fibromyalgia 3 years ago, but was suffering with symptoms since I was

> in my mid 20's. 33y/o now.

>

[Guest guest]

Hi Ann,

 

I just wanted to say you might want to have your husband tested for Lyme. I have

been sick the last 5 years with various symptoms that were diagnosed as MS and I

was tested for Lyme. My results came back yesterday and I am positive for the

Lyme bacteria. Lyme mimics " MS " symptoms. A reputable lab needs to be used not

on like Quest-- one such as Igenex or another reputable lab. Lyme can be

treated.

 

Hope your husband feels better soon and welcome to the group!

 

Best,

 

[Guest guest]

Hi Ann,Sorry to welcome your husband into the group :)It IS a relief isn't it,

when you finally realise you don't have something worse or are a hypochondriac.I

myself have found the best help through the Best Bet Diet (BBD), amalgam

removal, exercise in the form of yoga and swimming, CST (cranio-sacral therapy),

medicinal marijuana (pain, spasms, spasticity and incontinence) and CCSVI

treatment - the latter of which has done the most to get me back where I was

before MS.You'll find a wealth of information in this group - just shout and

someone will answer.Keep smiling (both of you, even if your husband's is wonkily

)Janet (PPMS wheelchair dependant, Spain)

To: mscured

From: atlanteanproductions@...

Date: Sat, 25 Jun 2011 11:48:48 -0500

Subject: New member

---------- Forwarded message ----------

Date: Fri, Jun 24, 2011 at 3:56 PM

Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today!

To: mscured Moderator <mscured-owner >

Hello!

My husband is 41 years old and was diagnosed with MS on June 1st. In a way

it was a relief because we always knew something was " off " and he struggled

for the last 9 years with intermittent issues that no one could diagnose.

These issues ranged from the simple (having weakness in one arm and a

crooked smile) to the extreme (Bell's Palsy [facial paralysis of half his

face] and debilitating fatigue).

I am reading " Healing Multiple Sclerosis: Diet, Detox & Nutritional Makeover

for Total Recover " by <http://www.amazon.com/gp/product/0977344606>

Ann Boroch, Ann Louise Gittleman. We both joined a gym and are going every

other day. His episodes are not as bad as some, but we are interested in

learning as much as possible to fight this disease.

Thank you.

Ann Fanto

[Guest guest]

Echoing 's suggestion to be tested for Lyme and its co-infesctions through

IgeneX. My MD, who specializes in treating Lyme, calls my condition

" Lyme-induced MS " or " Lyme with an MS presentation " . I consider " MS " to be a

descriptive diagnosis (a diagnosis describing the collection of symptoms).

Bell's Palsy & fatigue are common symptoms for those with a Lyme infection. Lyme

could be the root cause of your husband's illness.

KC

>

>

> Hi Ann,Sorry to welcome your husband into the group :)It IS a relief isn't it,

when you finally realise you don't have something worse or are a hypochondriac.I

myself have found the best help through the Best Bet Diet (BBD), amalgam

removal, exercise in the form of yoga and swimming, CST (cranio-sacral therapy),

medicinal marijuana (pain, spasms, spasticity and incontinence) and CCSVI

treatment - the latter of which has done the most to get me back where I was

before MS.You'll find a wealth of information in this group - just shout and

someone will answer.Keep smiling (both of you, even if your husband's is wonkily

)Janet (PPMS wheelchair dependant, Spain)

> To: mscured

> From: atlanteanproductions@...

> Date: Sat, 25 Jun 2011 11:48:48 -0500

> Subject: New member

> ---------- Forwarded message ----------

>

>

>

> Date: Fri, Jun 24, 2011 at 3:56 PM

>

> Hello!

>

> My husband is 41 years old and was diagnosed with MS on June 1st. In a way

>

> it was a relief because we always knew something was " off " and he struggled

>

> for the last 9 years with intermittent issues that no one could diagnose.

>

> These issues ranged from the simple (having weakness in one arm and a

> crooked smile) to the extreme (Bell's Palsy [facial paralysis of half his

> face] and debilitating fatigue).

> I am reading " Healing Multiple Sclerosis: Diet, Detox & Nutritional Makeover

>

> for Total Recover " by <http://www.amazon.com/gp/product/0977344606>

>

> Ann Boroch, Ann Louise Gittleman. We both joined a gym and are going every

>

> other day. His episodes are not as bad as some, but we are interested in

>

> Thank you.

> Ann Fanto

[Guest guest]

some day i feel good and some i feel off the dizzy spells are enought to drive

you crazy and  having no energy. so i use alot of herbs that helps.  mine is

slow moving thank god i am not wheel chair bound. so i still get around good.

To: mscured <mscured >

Sent: Monday, June 27, 2011 10:35 AM

Subject: New member

 

---------- Forwarded message ----------

Date: Mon, Jun 27, 2011 at 11:30 AM

Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today!

To: mscured Moderator <mscured-owner >

I have for 10 year MS and I'm felling OK but somedays I don't feel OK and

because of that I would like to try some alternative methods.

------------------------------

[Guest guest]

---------- Forwarded message ----------

Date: Wed, May 2, 2012 at 1:18 PM

Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today!

To: mscured Moderator <mscured-owner >

hi, i'm debby, & i live in southern texas (near corpus christi).

i was diagnosed by my chiropractor in 2000; it then took a little over a

year for the medical doctors to diagnose rr/ms. i was on copaxone for about

a year, but have not taken any meds since then, almost ten years now.

problems & symptoms have been tolerable until the last couple of months,

and i'm now trying to get set up with a new neuro, as i've moved almost 300

miles from the last one i saw! i am very interested in alternative methods,

even if i do ultimately go back on 'standard' ms therapies.

i look forward to the opportunity to learn from the group's experience!!

thanks & nice to meet y'all!

debby

------------------------------

[Guest guest]

Hi ph,

And thank you for your insights. I can tell already I've found the right group!

I've modified my diet dramatically, eliminating almost eveything linked to

inflammation. Dairy is out and has been except for the occasional piece of

cheese (vices, vices). I'm about 90% organic, and take more supplements than I

could list. I will however check out the supplements you listed and add them to

my regiment if I don't already have them. Today is my consult with a bio dentist

to get te poison removed from my mouth! Thanks for the suggestions!

Jen

>

> Hi Jen, Like you I have been digging and pushing mountains aside to find what

causes this and how to rectify it. I believe you are right, drugs are not the

answer, or at least not for me. Anti-inflammatory diet, detox,detox detox, and

targeted supplementation are working for me. I also fully completed my dental

revision 8 months ago. I do fall down occassionally when I forget to pay

attention, but that is getting better too.

>    Soy, canola, corn, gluten, msg, gmo foods, and heavy metals are the primary

enemies. Coconut oil(research lauric acid) is your friend, as is cilantro,

parsley, squash, lemons, fresh young coconuts, and aloe vera. All fresh and of

course organic. Lots to learn. Research pertussis toxin and aloe vera as a

moderator of MS in mice. Research orotic acid and the remyelination of axonal

ganglia in rats and you won't wonder why I use magnesium orotate as my chioce of

magnesium supplement. Research the apoptic death of neurons due to the hardening

of their mitochondria and glutamate transfer defect and you will never touch msg

or any other excitotoxin. Don't forget that cream and burtter are ok in moderate

amounts,(for me), but milk contains butyrophilin which causes our immune system

to attack myelin. P.S. 4 weeks since I have used even one cane or crutch.

>

>

[Guest guest]

Welcome! You will find a lot of good information here. And support. I find your

comments on contraception to be of significance. They are synthetic and or horse

estrogens which have a different 'messenger' than human estrogen. Our food

supply is heavily contaminated with poisonous estrogen mimicing compounds.  I

have been researching the role of estrogenic compounds in inflammation and

general wellbeing. Could birth control play a role in the higher incidence of MS

in women vs men??? This led me to study progesterone, and lo and behold it has

been proven to aid in axonal remyelination in rats.  

     Diet is all important! Yes the Whals Diet is good and some members here

tout the Best Bet, or BB Diet. Another enlightened member here suggested low

dose benadryl.I am on a very strick diet, did a lot of food allergy testing,

etc. Any form of corn is poison for me.An interesting note here is that

virtually all corn is now gmo infected to some degree. Livestock fed gmo corn

either die or become sterile. There are now many lawsuits over this in the U.S.

high fructose corn syrup, glucose-frutose and natural sweetener are code names

for this insidious poison. Sorry for digressing, I embarked on the elimination

diet, slowly including things from Whal's and BB. IF I feel a tingle or a

sensation of a reaction, I imeediately take 5mg of uncolored childrens benadryl.

It works amazingly well for me! It seems to stop a relapse, or at least stop the

severity. I use no drugs or anti-inflammatories at all. I think the benadryl

works by stopping the allergic

reaction, which leads to the inflammation. This is the only drug of any type

other than natural progesterone cream I have used. A wonderful member of this

group posted this idea a couple weeks ago. It works so well for me that I am

feeling guilty for not doing a good job of reporting how, when and why I use it.

I do not proclaim it to be a cure, but a valuable assist, as I learn how and

what to eat on my healing learning jouney.  Keep studying and learning, you are

going to be ok. ph