Freaking: Need a little help from my friends

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Freaking: Need a little help from my friends

Postby marymac » Mon Apr 01, 2013 11:49 am

Hi ho All

Hate to come on seemingly only when I need info but I know ya'll understand. SO, here's my problem: did the big "no no" and strained while on the can. . . now by lower back is screaming at me. . . syrinx is from C-3 conus (all the way down) and have not had this happen yet. . . don't know if I popped a hole in it, just strained it, or have a kidney infection (am on antibiotics for strep throat 3rd day now). If I sit perfectly still and take all pain meds, am OK. When I move, even to get up and down, get terrible pain shooting only in the lower back: waist down, and seems to stop at hips. . . no shooting pains which is good, but OMG the pain in lower back is the worst I've ever had. Suggestions? Comments, other than I am a dumbshit (every pun intended) or what? Takes my breath away. Does not hurt to go to the bathroom, but did this last night and have been in max pain, albeit small area relatively, since. Hoping to hear "it will pass" but what if I popped it: how would I know the difference? To make things perfect, have my Social Security phonecon tomorrow at 11am. . . this time my doctor wrote a very stern and descriptive letter, including "she will need an electric wheelchair soon", and "extensive" SM, etc. Loosing my hands, can't wring out clothes, etc. Still manage to paint on happy face every day but don't know why: figure if I look better I'll feel better, who am I fooling? So anyone done this, please give me guidance. Just saw my main doc and NS last week; both agreed I've worsened but should be holding my own for awhile, then I blew it. Just don't know how bad. Thx for any input.
Love * hugs
Marymac
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: Freaking: Need a little help from my friends

Postby kiminfla » Tue Apr 02, 2013 5:12 pm

I don't have SM and don't have any input to share but just wanted to send a gentle hug. I pray things improve for you! Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Re: Freaking: Need a little help from my friends

Postby marymac » Tue Apr 02, 2013 8:01 pm

Thanks Kim, you're a sweetie.
Sunshine & smiles
Marymac
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: Freaking: Need a little help from my friends

Postby hotsauceman » Sat Apr 06, 2013 7:52 am

You have to smile when you go to your doc for the umpteenth time and all he's got is "yup, you are getting worse. Come back and see me in six months." Hang in there Kiddo.
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Re: Freaking: Need a little help from my friends

Postby RIrider » Mon Apr 29, 2013 3:13 pm

Marymac...I like your avatar...your purple blouse matches the flowers just right. The flowering trees in my area are blooming and it is soooo nice to be outside again and taking it all in! Enjoy the spring! :)
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Re: Freaking: Need a little help from my friends

Postby wendi » Tue Jun 04, 2013 8:33 am

MM: I have not been here in a while, so I'm just seeing this now. I know how that feels even tho I don't have SM. I hope you are better by now, if not, I hope you went and got checked. If you strain and have pain like that, you need to get to a Dr ASAP and have a new MRI done to see what is going on. I have had problems and my PCP said I could have a blown disc. If you have pain that is not your normal pain, then you need to go even to the horrid ER! I hope you have and your got some answers and some better drugs. My thoughts and good wishes are being sent to you.

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: Freaking: Need a little help from my friends

Postby syrinx48 » Wed Jun 05, 2013 8:13 am

Marymac,
Just as Wendy said, I am sorry I didn't notice your message. It was a few weeks ago that I got antibiotics from my urologist for my never ending uti's. When I picked them up at the pharmacy they told me that I couldn't take these because they interacted with depakine (or depakot?). But then they said that it was only for 5 days and that I wouldn't probably notice a thing. Oh were they wrong! I never experienced such a pain as I only start having the SM, and when I didn't know I had a SM. the pain then was so horrible that I would have gladly jumped off a bridge just to get rid of it.
Now that I am having these medications the pain is bearable, so now and then breakthrough pains.

Could it be that the antibiotics have done the same thing to you?

Annemarie
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Re: Freaking: Need a little help from my friends

Postby marymac » Fri Jun 14, 2013 3:33 pm

Hi Ho Wendi and Anne Marie

So glad to hear from both of you -- been too long. Much better now and do think it was the antibiotics. Am taking Dulcolax regularly now, and it really does seem to help. It is a "softener" versus a laxative. . . and is pink! Thank you both for writing, nice to hear a few folks coming back to the board. I've had the most excellent correspondence with Graybo, he really knows his stuff, and am experimenting with some of those things. Hope you are both doing well and will be back regularly. Nice to hear from everybody, but you two are "oldies" like I am!
Have the best day/night you can.
Sunshine & smiles
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: Freaking: Need a little help from my friends

Postby wendi » Mon Jun 17, 2013 9:41 am

Glad to hear you are doing better and you think you know what it is.

I check in from time to time. Don't worry, I lurk around when you least epect it. I miss many of you and some of the old timers who seem to be missing. Take care everyone!

Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: Freaking: Need a little help from my friends

Postby marymac » Thu Jun 20, 2013 9:52 pm

Ditto kiddo. . . wishing the best for you.
Another old-timer
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: Freaking: Need a little help from my friends

Postby tennesseewalker » Sat Jul 27, 2013 10:20 pm

I'm glad you're feeling better Mary. Fingers crossed on SSDI...
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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