Newbie: Mystery disease...can I hang out here?

Tonya499 · 08-19-2012, 07:24 AM

Last Tuesday I woke feeling fine. I fed the dogs, made coffee etc. then I got the weirdest cramps in my butt. DH massaged it and I sat on a heating pad. Next an overwhelming need for a bowel movement. That's when I realized I had no control over my anal sphincter. Within 20 minutes I could not walk. I just got released from the hospital. I can walk now, albeit slowly and with a limp. My left leg is very weak. I still have saddle paresthesia and I have to self cath. Name a test, I probably had it. All normal. I am happy that I can walk but bummed that I have to self cath. I don't have a diagnosis, but can I hang out here?

Patrick Madsen · 08-19-2012, 12:19 PM

By All Means Tonya. Really sorry to hear of your challenges but glad you found us. I trust you will improve and get back to your normal life. Welcome!

willingtocope · 08-19-2012, 01:04 PM

My wife's current problems began with similiar symptoms...she was DXd with sciaitica. I, too, started with similiar problems...particularly difficulty walking. Eventually, they decided I had MS.

Wish I had better news for you, but my guess is you're just going to have to wait for the next symptoms, or for it all to go away.

Bonnette · 08-19-2012, 03:50 PM

Hi Tonya. This sounds like it might be TM (transverse myelitis), but I am not a doctor and - as willingtocope says - time will tell, your symptoms might clear up altogether. It's so hard to play that waiting game! I'm glad you're able to walk again, and hopefully you'll get additional return.

As you will discover reading through the posts here, it is not uncommon at all to have very disturbing symptoms, but no definite diagnosis. Sometimes it takes a lot of effort to find out what's wrong - second and third opinions, more tests (even repeats of tests you've already had, since sometimes it takes awhile for correlation to show up between symptoms and test results), possible referral to specialists, etc.

I hope that you will continue to pursue a diagnosis. Seek out additional medical opinions if your doctor seems stumped, or too willing to accept the status quo. Even though it is not unusual for a definite diagnosis to be elusive, make sure you've exhausted the possibilities before you include yourself in that category - many ailments can actually be treated in the early stages (bacterial infections, for example), but not so much later on.

Find out which tests you have had, and keep records - you might need these in the future. Don't hesitate to ask questions of your doctor and keep after him/her for help, if you need it.

By all means, you are welcome to hang out here! Whatever your diagnosis turns out to be - or even if you don't get that answer - we can help with symptoms and management. Welcome to CareCure!

Wise Young · 08-23-2012, 11:21 AM

Quote:

Originally Posted by Tonya499

Last Tuesday I woke feeling fine. I fed the dogs, made coffee etc. then I got the weirdest cramps in my butt. DH massaged it and I sat on a heating pad. Next an overwhelming need for a bowel movement. That's when I realized I had no control over my anal sphincter. Within 20 minutes I could not walk. I just got released from the hospital. I can walk now, albeit slowly and with a limp. My left leg is very weak. I still have saddle paresthesia and I have to self cath. Name a test, I probably had it. All normal. I am happy that I can walk but bummed that I have to self cath. I don't have a diagnosis, but can I hang out here?

Tonya,

The distribution of the symptoms (gluteus maximums cramp, loss of anal sphincter control, saddle paresthesia) strongly suggest something happening to your sacral spinal cord or left cauda equina (left leg weakness). As suggested by others, transverse myelitis (TM) is a possible diagnosis but over half of TM cases really have no identifiable cause. However, TM involving the sacral spinal cord is rare. Most cases occur at the thoracic level. Another possibility is a herniated lumbar disc but I assume that this has been ruled out. Based on your description, you should recover more function in the coming months.

Please do hang out here. You are very welcome here.

Wise.

Sue Pendleton · 08-28-2012, 01:41 AM

Hi Tonya,

I agree with Wise. I've never heard of a case of Sacral TM. Did you get a referrel to a neuro-urologist?

08-19-2012, 07:24 AM	#1
Tonya499 Junior Member Join Date: Aug 2012 Posts: 1	Newbie: Mystery disease...can I hang out here? Last Tuesday I woke feeling fine. I fed the dogs, made coffee etc. then I got the weirdest cramps in my butt. DH massaged it and I sat on a heating pad. Next an overwhelming need for a bowel movement. That's when I realized I had no control over my anal sphincter. Within 20 minutes I could not walk. I just got released from the hospital. I can walk now, albeit slowly and with a limp. My left leg is very weak. I still have saddle paresthesia and I have to self cath. Name a test, I probably had it. All normal. I am happy that I can walk but bummed that I have to self cath. I don't have a diagnosis, but can I hang out here?

08-28-2012, 01:41 AM	#6
Sue Pendleton Moderator Join Date: Jul 2001 Location: Wisconsin USA Posts: 9,108	Hi Tonya, I agree with Wise. I've never heard of a case of Sacral TM. Did you get a referrel to a neuro-urologist? __________________ Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow." Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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08-19-2012, 12:19 PM	#2
Patrick Madsen Senior Member Join Date: Apr 2009 Location: Blaine, Wa Posts: 3,874	By All Means Tonya. Really sorry to hear of your challenges but glad you found us. I trust you will improve and get back to your normal life. Welcome!

08-19-2012, 01:04 PM	#3
willingtocope Senior Member Join Date: Jun 2010 Location: Pleasant Hill Iowa Posts: 682	My wife's current problems began with similiar symptoms...she was DXd with sciaitica. I, too, started with similiar problems...particularly difficulty walking. Eventually, they decided I had MS. Wish I had better news for you, but my guess is you're just going to have to wait for the next symptoms, or for it all to go away.

08-19-2012, 03:50 PM	#4
Bonnette Senior Member Join Date: Dec 2008 Location: Colorado Posts: 2,603	Hi Tonya. This sounds like it might be TM (transverse myelitis), but I am not a doctor and - as willingtocope says - time will tell, your symptoms might clear up altogether. It's so hard to play that waiting game! I'm glad you're able to walk again, and hopefully you'll get additional return. As you will discover reading through the posts here, it is not uncommon at all to have very disturbing symptoms, but no definite diagnosis. Sometimes it takes a lot of effort to find out what's wrong - second and third opinions, more tests (even repeats of tests you've already had, since sometimes it takes awhile for correlation to show up between symptoms and test results), possible referral to specialists, etc. I hope that you will continue to pursue a diagnosis. Seek out additional medical opinions if your doctor seems stumped, or too willing to accept the status quo. Even though it is not unusual for a definite diagnosis to be elusive, make sure you've exhausted the possibilities before you include yourself in that category - many ailments can actually be treated in the early stages (bacterial infections, for example), but not so much later on. Find out which tests you have had, and keep records - you might need these in the future. Don't hesitate to ask questions of your doctor and keep after him/her for help, if you need it. By all means, you are welcome to hang out here! Whatever your diagnosis turns out to be - or even if you don't get that answer - we can help with symptoms and management. Welcome to CareCure!