New to group!

[Guest guest]

Hi Everyone. My name is Carol. I'm 46 yrs old and was dx with RR MS

in 97. I was the " Queen " of the ABC's for 4 yrs. Yes, I tried them

all. and all I got out of them was side effects, holes in my body,

and more relapses! Not to mention the question of what all this

medication was going to do to me in the future. I never was content

in the handfull of pills I swallowed each day, along with my

injections, and knew I'd be trying Other things.. . . .And then came

the LDN. (Scoob) Whom I've known from the beginning of my MS

dx. found out about it and passed on the info. Wasting NO time, I

made my first appointment with Dr. Bihari and flew from Florida to

NY. I not only Thank God for my want to look for something Better,

but I Thank for sharing with me what he found.

I've been taking the LDN since Sept. of 2002 and from the 4th day

on it, I noticed my spasms were gone. Within a week, my energy level

and balance was just about back to normal. NO MORE CANE!

As time went on, I started to realize that my short term memory was

getting better as well. along with my strength. I was taking walks

on the beach, something I hadn't been able to do in 4 yrs. I still

have my MS days, But for the most part, I forget I have MS!!! I also

went from having relapses that lasted up to 8 weeks at a time, at

least 3 pr year, to 0 since starting the LDN !!! I believe in the

LDN, and have had so many people get started on it, Most of which

are having all the same results. There have been 2 that have stopped

it, saying it didn't do anything for them. Personally, I don't

believe they gave it much of a chance. But to me~just with the idea

that it can STOP the progression and not just SLOW it ( like all the

ABC'S) would be enough for me to stay on it FOREVER!

Good luck to you all. Be well.

Carol : )

[Guest guest]

Hi Jana? Im guessing from the email. My name is I live in NYC and I am a special educator, I have two children, daughter and son 11 and almost 7. My son Aedan has BPES . Of course I love him to bits but he is a tough kid. I think we may have a lot in common. if you want to email me personally we can discuss more. Aedan had speech delays and received E I then he scored way above and didn't need therapy in pre school. In Kindergarden I had him evaluated for articulation and perhaps OT . Does go to an Occupational Therapist specialized in sensory issues? Any way email if you want to discuss more. allison Rainamint@aol,com

In a message dated 3/29/2009 6:16:54 P.M. Eastern Daylight Time, janalasso@... writes:

Hello everyone,My son is 7 and has bpes. We have had two surgeries in Toronto. The last surgery was when he was four. He will need to have more surgeries as he grows. My concern right now is not his physical apperance, but rather his cognitive development. is a smart boy. He recieves all A's in school.(grade2)However, his behaviours at home are very hard to deal with! I know that ADHD and other LD's can be part of this sydrome and I have never wanted to label my child. I have always seen him as an "unique", one in a million child. That is how I refer to his syndrome. One in a million!He has a hard time with textures (food and clothing), following simple directions, and he is fanatical. This makes life challenging to say the least. He struggles socially at times. It is becoming more apparent to me, that "winging" his development behaviourly and socially may not be possible. I work with special needs children everyday. My job is immplementing programs for thier social and acedemic success at school! When it comes to my own son I struggle to see his needs. Does anyone have a suggestion as to where I go from here??

[Guest guest]

My daughter is now 26. I wish there had been a more proactive, coordinated approach from her medical team. In hindsight I wish they would have suggested counseling at an early age to help both of us learn to deal and cope with the Psychosocial issues that come with any congenital condition. And I’m a nurse and should have thought of it!

Cheryl Vahl

Iowa City IA

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