help

[Guest guest]

I think this is a great idea, Tom, and I hope you find the help you need with it.

Hugs,

Challis

Dear Fellow MS"ER,

I have a friend with ms that is living nearby and is all alone. He is doing as best as he can. As we all know there are times that we all need a hand. This friend does everything in his power to help any and all other ms'er's via the internet. However, there are times that he needs a little help and there is no help available for him. My wife and I do the shopping for him but my wife works and it is hard to assist him in other areas.

No doubt there are other ms'er's with similar problems, I know several myself. Needless to say living with ms is a burden but to do it all alone is sometimes damn near impossible.

You all know how I basically feel about drugs, doctors, the Nat'l MS Society and the usual procedures that are perpetrated on those with ms. They are with good intentions but actually do little to help when help is required. It usually involves a waiting list, a lack of funds or some other half-ass reason to put off help.

Several years ago myself and several other ms'er's attempted to create a group to help other ms'ers with unexpected circumstances. These situations might involve anything and everything that could cause an ms'er difficulty. Unfortunately, we failed. The "Red Tape" was just too overbearing for us and we did not have the expertise to get through it. ie: Tax status, legal issues, accounting issues, etc.

Be that as it may...There is still a need and if it is going to occur it will only happen if we the ms'er's do it. I would like to try again but we need expert help and expert connections to get it done.

If someone needs help we should be able to help now right now.

Is anyone interested? Any suggestions?

Regards,

Tom

[Guest guest]

Dear Ms. ,

Congratulations on your new post. I have been diagnosed with MS since 1984. Coincidentally, I sent the following post to my MS groups last night ;

Dear Fellow MS"ER,

I have a friend with ms that is living nearby and is all alone. He is doing as best as he can. As we all know there are times that we all need a hand. This friend does everything in his power to help any and all other ms'er's via the internet. However, there are times that he needs a little help and there is no help available for him. My wife and I do the shopping for him but my wife works and it is hard to assist him in other areas.

No doubt there are other ms'er's with similar problems, I know several myself. Needless to say living with ms is a burden but to do it all alone is sometimes damn near impossible.

You all know how I basically feel about drugs, doctors, the Nat'l MS Society and the usual procedures that are perpetrated on those with ms. They are with good intentions but actually do little to help when help is required. It usually involves a waiting list, a lack of funds or some other half-ass reason to put off help.

Several years ago myself and several other ms'er's attempted to create a group to help other ms'ers with unexpected circumstances. These situations might involve anything and everything that could cause an ms'er difficulty. Unfortunately, we failed. The "Red Tape" was just too overbearing for us and we did not have the expertise to get through it. ie: Tax status, legal issues, accounting issues, etc.

Be that as it may...There is still a need and if it is going to occur it will only happen if we the ms'er's do it. I would like to try again but we need expert help and expert connections to get it done.

If someone needs help we should be able to help now right now.

Is anyone interested? Any suggestions?

Regards,

Tom

Ms , what we need is a network that one could call if and when help is required. Hopefully it could be set up to assist immediately. With the wondrous communication today involving the internet, cell phones, etc. we could accomplish this for emergencies, unexpected problems, etc....this is a dire need especially for those that are alone.

I belong to a number of internet support groups and most folks with ms are ready, willing and able to help others with ms in any way that they can.

Thank you for your time and consideration.

Tom Bayuk 19868 Cypress Woods Ct.

North Fort Myers, Florida 33903

[Guest guest]

You need to find a neurosurgeon, preferably one with lots of experience in

Chiari malformation. A neurosurgeon who is a Chiari expert will order a

full spine and brain MRI, preferably a CINE MRI (video of flow of cerebral

spinal fluid to look for blockages). A full spine MRI checks for

syringomyelia, which is usually caused by Chiari malformation, as well as

tethered cord.

My son, who has low lying tonsils, hears a whooshing sound, besides his

pulse and ringing. A high resolution CT scan showed that this is due to his

juggler vein lies against his ear drums.

Best wishes,

Barbara

In a message dated 6/3/2011 8:32:28 P.M. Eastern Daylight Time,

angeleyes1346041@... writes:

i am 22 n i have 7 kids n i am n so much pain i hardly get out of bed n as

u all know that is hard to do w kids bc they need u but i had a cat scan

done n they said my tonsils was low but it wasnt the problem but how would

they know if none of them know about arnold chairi i was just wondering if

anyone had anty ideas about what i could do or say to the doctors bc they all

seem like there is nothing wrong n treats me like i have no idea what i am

talking about n my pain n very bad does anyone else hear like fluid

leaking n ur head it kinda sounds like a leaking faucet it bugs me n the doctor

keeping tell me that i am not hearing it but how can they tell me what i am

hearing n my own head just let me know aabout any of this u can help