need answers and support

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need answers and support

Postby susanp » Sat Apr 09, 2011 11:53 am

Hi,
My name is Susan and I live in Fayetteville North Carolina. I have a syrinx that begins at T-6 and extends to L-1 and measures 2mm at widest area. I have burning pain from my waist down. I have some on and off numbness and tingling in my left leg. I have just recently started have a lot of bladder irritation (spasms). I read the stories and everyone sounds so much worse that I am, so I'm not sure I should even be on this site. I have no one to talk to because no one has ever heard of syringomyelia. I have an amazing general practitioner and a good neurologist. I am afraid of what happens next. Does this thing keep growing? I have had 3 mri's in 3 years and each time it extends a little further. Is there anyone out there that has a syrinx like mine? Any suggestions for a neurologist who specializes in syringomyelia? I would love to communicate with someone who understands.
Thanks.
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Re: need answers and support

Postby *Hope* » Sun Apr 10, 2011 8:53 pm

Hey Susan! Welcome to the boards.

Of course you're welcome here! You have SM and that's one thing to connect with people about on here. I have Chiari w/o SM, so I won't be much help, but I wanted you to know that you will find a lot of people like you on here. Try the other board on this site too (chiari, syringo, and related disorders) and you may find more topics that are about symptoms. Be patient as the response times are usually kind of slow on here. Most of us don't feel very good most of the time, so a lot of people may be reading but unable to answer at that time.

I hope you find some friends, help, and advice on here. Don't be shy about making a post on the other board too and reaching out with more questions.

I wish you the best and hope you find good care and relief! :)
CM1
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Re: need answers and support

Postby susanp » Mon Apr 11, 2011 9:42 am

Hey Hope,

Thanks so much for responding. I did post on the other board also and I did get one response. I keep checking everyday, so thanks for telling me that sometimes replies are kind of slow. I totally understand about the feeling bad and not feeling like replying. Many times I don't feel like interacting with anyone and it's hard because no one I know understands how I feel. I have had so many people say that I don't "look" like anything is wrong with me. No one I know has ever heard of a syrinx or Chiari. I am hoping that I get to know people on this website that I can communicate with that understand how I feel. Thanks again and I wish you the best!

Susan
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Re: need answers and support

Postby Kate456 » Mon Apr 11, 2011 11:44 am

Hi Susan,

Do you have Chiari also? Are you able to drive an hour or so away for consultation?

Kate
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Re: need answers and support

Postby susanp » Mon Apr 11, 2011 12:01 pm

Hi Kate,

I have not been diagnosed with Chiari. Yes, I can drive an hour away. Do you have a suggestion?

Thanks
Susan
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Re: need answers and support

Postby Kate456 » Mon Apr 11, 2011 9:10 pm

Hi Susan,

I sent you a PM with more info.

Kate
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Re: need answers and support

Postby marymac » Tue Apr 12, 2011 12:19 pm

Hi Ho Susan:

I have SM also. Had never heard of it until a radiologist showed it to me on my MRI. First you must know that we have friends that are on every day; some check in and out every now and again, but if you ask a question, you WILL get answers.
I was stunned and in total denial when I got here and have learned more here than anywhere else. I had 2 NS: one said I had Chiari as well, the other said no way. So I came here for the support and wound up with friends I wish I'd known all my life; sympathetic to pain, understood everything I threw at them, even got DH advice! No question is too small or "stupid", and we all have opinions, some vary greatly. So take a deep breath knowing there's a fun group that handles SM and Chiari with kindness and if needed, you can talk all night. Most of us don't sleep so good sometimes.
Take care, one step at a time, and now we're your "group" too.
Gentle hugs and fake smiles
Mary
Marymac
Central disc herniations C5-6 and C6-7, extensive syringohydromyelia cavity throughout the cervical & thoracic cord (large syrinx from C6 inferiorly.)

"Every day is a gift: Thats why it's called the Present"
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Re: need answers and support

Postby karenb » Tue Apr 12, 2011 2:25 pm

Hi Susan,

You are most definitely welcome! This is a really caring, supportive, and knowledgeable group of people.

I have Syringomyelia from T6-T9, 3 mm at its widest. I had some of the same weird syptoms you describe for about 10 years before I was diagnosed. Even though my syrinx is fairly small, it has rendered my legs somewhat useless (read that I use a walker at home and a wheelchair any time I leave the front door).

susanp wrote: I have just recently started have a lot of bladder irritation (spasms).


Syringomyelia can cause this sort of behavior. A friend of mine who had had SM since 1964 once wrote "...the other thing we have to deal with is that my bladder spasms at will, dumping more or less of its contents depending on how intense the spasm is, how long it lasts, and how full my bladder is."

My bladder is actually paralyzed, although I still feel strange sensations and irritation from it. My NL was treating it as overactive bladder (which is what it felt like) when, in fact, I was retaining urine. Ultimately, I ended up with a series of urinary tract infections and kidney infection, which resulted in my GP sending me to a Urologist. He did some tests in his office and ordered a Urodynamic Study, all of which told us what was really happening. I would strongly suggest you need to get to a Urologist so that you can get to the bottom of whatever is happening "down there", since leaving the issue untreated can lead to kidney damage.

Again, welcome to the board, and I wish you all the best in your struggle with this condition!

Karen

P.S. I thinnk I responded to your post on the "Chiari, Syringomyelia, and Related Disorders" board, but
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