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Postby WeeMorgan » Wed May 16, 2007 3:09 pm

Hi everyone. I was recently diagnosed with syringomyelia. I would appreciate any information you could give me because I can't find a lot on the internet. Thank you.
WeeMorgan
 

Welcome

Postby christinewebb » Wed May 16, 2007 3:17 pm

I just wanted to say welcome to the board. You will find that you have come to the right place for help and information. I was diagnosed in January this yr myself and it has been a God sent for me.

Let me just tell you that this will be the longest stangest trip you will have ever gone on. But the people on here will help you navigate it.

If you are anything like me, your looking for a lot of information. There are a couple of really good sites to get info - TCI's website and the two links below. I am sure Mac or Cash71 will be able to offer tons more help too. They have been really wonderful along with everyone else.

http://www.northshorelij.com/body.cfm

http://www.ninds.nih.gov/disorders/syri ... myelia.htm

Well, good luck! And you will be added to my prayer list.. Christine
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Postby WeeMorgan » Wed May 16, 2007 3:23 pm

Thank you very much.
WeeMorgan
 

Postby cash71 » Wed May 16, 2007 3:28 pm

Welcome Weemorgan, Glad you found your way to us. As you might have noticed our board crashed and is just back up and running today.

Where is your syrinx and what kind of symptoms are having? Yes, the first thing to do is educate yourself. B/c this is so rare you have no choice but to become educated yourself so that you can advocate for yourself to find the best possible care.

Syrinxes are caused by something. You need to get to an expert in the care of sm and work on finding out what caused yours. Once you know the cause you can work on trying to alleviate it. If you let us know what city you are close too someone may have a suggestion for a ns to go and see

I'll give you a few of my favorite sites to start with www.thechiariinstitute.com click on the videos tab and watch any of the videos that interest you. These are really great.

www.conquerchiari.org has great research articles that are broken down into everyday english making it easy to understand. Just click on research articles in the middle.

And the ASAP homepage also has a lot of great info too.

Again, welcome to the board and if you have any more questions, please ask.

8) Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby WeeLassie » Wed May 16, 2007 4:03 pm

This very site is by far the most informative, IMO. :P

http://www.asap.org/
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wee morgan

Postby razzle51 » Wed May 16, 2007 4:06 pm

If you give us where you live , we can see if there are any Drs in your area . A dr. with Knowledge of this is of the most importance .
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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doctors in dallas

Postby Jenintexas » Wed May 16, 2007 7:37 pm

any good dr. to go see for my CM1 in dallas area?
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Postby Sandy » Wed May 16, 2007 8:04 pm

WeeMorgan,

I have syringomyelia, too, T1-T6. Glad youi found us here. This is a great support site. And lots of good information, too.

love,
sandy :D
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Postby mac » Wed May 16, 2007 8:40 pm

WeeMorgan, welcome to the board. Can't say I know so much about Sm (syringomyelia) but I can help some times with symptom alleviation and such...there's lots more on here who know much more than I do about
it all....but if I can help, I'll sure try!!

Bless you and follow the advice above. Get to a full time expert, that is number one. Be your own advocate. Take up the battle and champion your cause. You have to try to be the number one member on your team to make things happen, because for the most part, no one else will. WE'll try to help all we can.

hugs,
mac (an old cowgal)
mac
 

Postby WeeMorgan » Thu May 17, 2007 8:22 am

Thank you all so much. My doctor did not tell me a lot, because he said he didnt know a lot, so he's sending me to some type of back specialist who can maybe help me. But he told me he didnt think there was a "cure." Right now I just have a lot of medication to help me with the pain. Someone asked about my symptoms. I have severe headaches, pain in my back that radiates down my arms, tremors that I cannot control, and weakness. It all came on suddenly.

I appreciate all your help.
WeeMorgan
 

Hello

Postby razzle51 » Thu May 17, 2007 8:47 am

Like I said if it is Chiari you must find a Dr. that knows this disorder . That is why if you share where you live we might be able to help you find a Dr. in your area .

Also here is a good site with list of symptoms .
http://www.chiarione.org/symptoms.html
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby WeeMorgan » Thu May 17, 2007 10:10 am

Thank you. That is very kind of you, but I have already been referred to a specialist who I will see in two weeks.

I want to thank everyone again for all the information you have provided.
WeeMorgan
 

Postby cash71 » Thu May 17, 2007 11:33 am

Weemorgan,

Maybe you won't realize it until you see him or her but "some type of back specialist" is not going to give you the answers you need and deserve.

How well you will do long-term will depend on how your treatment is managed and it can only be managed properly by someone with expertise in sm. No there isn't a cure. You have this for life so you need to fight hard for the best care and therefore the best long term outcome. Also some of your symptoms sound a little like cm. Maybe look at the chiarione.org webpage and see if any bells ring. This maybe something that needs to be looked at as well.

Remember you need to find what caused your syrinx and if it is cm causing it then you need to know that.

I wish you all the best and Good luck with your appointment,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby WeeMorgan » Thu May 17, 2007 12:56 pm

Thank you. I should have been more clear I guess. The doctor I am seeing specializes in neurological disorders of the spinal cord. I looked him up on the internet, and he seems to be highly regarded and respected. So we will see what happens. I do have one question. Does this cause paralysis? I'm sure the doctor next week will be able to tell me, but I am anxious to find out as much as I can as soon as I can.

Thank you.
WeeMorgan
 

Postby cash71 » Thu May 17, 2007 1:13 pm

Weemorgan,

I really only want to help you that why I keep insisting on the specialist. A lot of NS don't know a lot about sm. I 've been to several ns so far that had a special interest in sm only to be disappointed. You never know you could be pleasantly surprised and he will be knowledgable but just know that a lot of us have seen 4-5 or even more docs before we have found the right one. It is such a difficult but crucial thing to get right.

As far as paralysis, there are those on here that do have some degree of paralysis, most do not. There is no way to tell how your course will go. Everyone is different and it affects them differently. Usually it is a very slow progression and changes will occur over long periods. You need to educate yourself on what you can do to slow the changes down.

Bye for now,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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