advertisement
Reply
 
Thread Tools Display Modes
Old 08-10-2008, 08:30 AM #31
JoeMac's Avatar
JoeMac JoeMac is offline
Member
 
Join Date: Feb 2008
Location: Erie, Pa
Posts: 107
15 yr Member
JoeMac JoeMac is offline
Member
JoeMac's Avatar
 
Join Date: Feb 2008
Location: Erie, Pa
Posts: 107
15 yr Member
Default

LOL, I hear ya Cherie, months are WAY too much time to go through this.......on the GOOD side, my right hand is working better, not totally right YET but it IS working a little better......:-)

Thanks for the HOPE Cherie and you too Carolina, thanks for the prayers and words.........they are appreciated....:-)

Joe



Quote:
Originally Posted by lady_express_44 View Post
Yeah, well if any woman ever tells you that you have no idea about pain because you've never had to deliver a baby . . . you can laugh in their face. "HA!!!", you can say.

I have had two natural births, and was drip induced with both. I had 52 hrs or labor with one, and 36 with the other. Yeah, it hurt . . . but absolutely pales in comparison to a bad TM attack.

I think the hardest part is how long it lasts. At least with labor, it's over in hours to days . . . but with this, it goes on excruciatingly for WEEKS, and you can't escape it with pain relief. The other hard part is the "overstimulation" of sensations that are going on . . . the mind just goes on overload.

I was thinking the other day, they should probably just put us in an induced coma for about 6 weeks, like they do burn victims. When I have had other bad pain (like with the botched LP), at least I was so doped up I didn't know what was going on most of the time. Also, it's kinda like we have an out of body experience when we have very bad "normal" pain . . . but with this neurological stuff, there is just NO escaping it, it seems.

Just a week or two more, and it WILL get easier and easier from then on . . . .

Cherie
__________________
Dxd RRMS 12/23,06, Copaxone 2/07 to 9/07 - Rebif 10/07 to 7/08, BAD flare with Transverse Myelitis & Pancreatitis.....,9/08 Pseudo Cyst!!!! and another TM attack. Started Tysabri 9/22/08 - 10/21 Allergic reaction to Tysabri, SSDI Approved 11/14!! Continued Ty 11/17 with a Pre-medicate. Solumedral 12/11-12/13 Ty #5 Jan 12th!
JoeMac is offline   Reply With QuoteReply With Quote

advertisement
Old 08-10-2008, 12:55 PM #32
Gazelle's Avatar
Gazelle Gazelle is offline
Senior Member
 
Join Date: Jan 2008
Location: somewhere over the rainbow
Posts: 1,362
15 yr Member
Gazelle Gazelle is offline
Senior Member
Gazelle's Avatar
 
Join Date: Jan 2008
Location: somewhere over the rainbow
Posts: 1,362
15 yr Member
Default

Joe, just try not to be a hero and develop kidney stones immediately after you get better! That would only add insult to injury.

Aw, come on, Cherie. Childbirth is really painful--you gotta put up with the little buggers for 18 years BEFORE you can kick them out. TM pales in comparison.


Glad your hand's a little better today! That's a GOOD THING!
__________________
A Hairy Chicken Is Better Than A Hairy Hand!
Gazelle is offline   Reply With QuoteReply With Quote
Old 08-10-2008, 12:59 PM #33
lady_express_44's Avatar
lady_express_44 lady_express_44 is offline
Grand Magnate
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
lady_express_44 lady_express_44 is offline
Grand Magnate
lady_express_44's Avatar
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
Default

Quote:
Originally Posted by Gazelle View Post
--you gotta put up with the little buggers for 18 years BEFORE you can kick them out.


Good point!!!

Cherie
__________________
I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
.
lady_express_44 is offline   Reply With QuoteReply With Quote
Old 07-10-2009, 06:28 AM #34
blue18 blue18 is offline
New Member
 
Join Date: Jul 2008
Posts: 3
15 yr Member
blue18 blue18 is offline
New Member
 
Join Date: Jul 2008
Posts: 3
15 yr Member
Default TM Relapse

Hi Joe,
I'm the lady that Cherie was talking about. The TM attack is very serious, out of all relapses it is/was the worst. It's coming from the lesion in the spinal cord, and I think that explains it. I'm still recovering from it. I hope you have already recovered!!!
Have a happy and healthy summer!!!
blue18 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (07-10-2009)
Old 05-28-2012, 05:03 PM #35
Lisalu Lisalu is offline
Junior Member
 
Join Date: May 2012
Location: London
Posts: 6
10 yr Member
Lisalu Lisalu is offline
Junior Member
 
Join Date: May 2012
Location: London
Posts: 6
10 yr Member
Default

Quote:
Originally Posted by lady_express_44 View Post
Yeah, well if any woman ever tells you that you have no idea about pain because you've never had to deliver a baby . . . you can laugh in their face. "HA!!!", you can say.

I have had two natural births, and was drip induced with both. I had 52 hrs or labor with one, and 36 with the other. Yeah, it hurt . . . but absolutely pales in comparison to a bad TM attack.

I think the hardest part is how long it lasts. At least with labor, it's over in hours to days . . . but with this, it goes on excruciatingly for WEEKS, and you can't escape it with pain relief. The other hard part is the "overstimulation" of sensations that are going on . . . the mind just goes on overload.

I was thinking the other day, they should probably just put us in an induced coma for about 6 weeks, like they do burn victims. When I have had other bad pain (like with the botched LP), at least I was so doped up I didn't know what was going on most of the time. Also, it's kinda like we have an out of body experience when we have very bad "normal" pain . . . but with this neurological stuff, there is just NO escaping it, it seems.

Just a week or two more, and it WILL get easier and easier from then on . . . .

Cherie
Hi, I need some support pleeeeeeeeeze. Ive had a really rough year and was diagnosed with anxiety and depression in July 2011. By end August 2011 I lost the feeling in my legs, groin and torso and was hospitalised for a week for testing. They found an area of inflammation on my spine at bra strap level and diagnosed me with TM. They also found 3 "silent" white spots on my brain which they said were indicative of MS. As you can imagine all this exacerbated my anxiety/depression to the point they were having to keep me sedated on Valium every day. However, after 3 days of IV steroids I was allowed home to recover. The neuro said based on my lab results I had a 60-70% chance of developing MS. Not what you want to hear really. Anyhow, cut to january 2012 and mostly my body was back to normal so I'm think great brilliant marvellous, now time to get fully mentally well and get back to my life. It's now may 2012 and all my myelitis symptoms have started again. My legs and feet are burning, my skin is so sensitive and I can only move around the house, I cannot walk any distance at all. I have to speak with my GP but is it normal to have a recurrence of this so quickly? I was just regaining confidence in my body and now I feel like I've been dealt another massive blow. I cry lots because I'm so sad that my life has gone this way. I have a good job which I'm at risk of losing due to sickness absence and my boyfriend and I really want to get married and start a family. I feel like the rug has been pulled out from underneath me. Can anyone give me ANY sort of encouragement? Will this episode subside like the last? I know my anxiety disorder makes everything worse so I'm hoping when that's sorted my whole body will calm down. God bless you all from this distressed Scottish girl :-) xx
Lisalu is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dejibo (05-29-2012), Judy2 (05-29-2012), SallyC (05-30-2012)
Old 05-29-2012, 07:29 AM #36
Dejibo's Avatar
Dejibo Dejibo is offline
Elder
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Dejibo Dejibo is offline
Elder
Dejibo's Avatar
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Default

Hello LisaLu, nice to meet you. I am sorry you are having a hard time. MS is a long haul disease, and most of the time it isnt diagnosed instantly. sometimes trying to control anxiety is like holding back the sea from washing on the shore. I am glad they are giving you good meds to help.
__________________
RRMS 3/26/07
.

Betaseron 5/18/07
.

Elevated LFTs Beta DC 7/07
Copaxone 8/7/07
.



.
Dejibo is offline   Reply With QuoteReply With Quote
Old 05-29-2012, 09:18 AM #37
lady_express_44's Avatar
lady_express_44 lady_express_44 is offline
Grand Magnate
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
lady_express_44 lady_express_44 is offline
Grand Magnate
lady_express_44's Avatar
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
Default

Hi Lisa,

I don't come around this forum much these days, but I happened to today and saw your posting.

Is there any chance you have an untreated infection going on right now, like your sinuses, a TOOTH, a UTI, etc? It has always been infection that has stirred up these attacks for me, so I must be sure to treat them promptly and fully when I get one.

During my first attack, the "on again/off again" stirring occurred for 18 months after the initial attack, and during the second one, it lasted for 2 years. I did not do steroids myself, but often-times people do, and that may only serve to interrupt the inflammatory process. Instead I opted to ride it out, because it seems our bodies want to go through that one way or another, and I'd rather get it over and done with (even if the relapse is more severe).

So it may be that the steroids calmed things down initially, but the relapse is back to 'finish the job'. Or, it may be the normal fluctuations that seem to happen for many of us for the (up to) 24 months after the initial relapse ... but if that is the case, for me it never got as the initial event. Or, perhaps it is infection ...

Please be sure you have NO infection going on though, especially with things like your teeth (my third attack was due to inflammation in a tooth and I didn't put 2+2 together at the time).

Cherie
__________________
I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
.
lady_express_44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ANNagain (05-29-2012), Judy2 (05-29-2012), Koala77 (05-30-2012), SallyC (05-29-2012)
Old 05-30-2012, 06:25 AM #38
Lisalu Lisalu is offline
Junior Member
 
Join Date: May 2012
Location: London
Posts: 6
10 yr Member
Lisalu Lisalu is offline
Junior Member
 
Join Date: May 2012
Location: London
Posts: 6
10 yr Member
Grin

Quote:
Originally Posted by lady_express_44 View Post
Hi Lisa,

I don't come around this forum much these days, but I happened to today and saw your posting.

Is there any chance you have an untreated infection going on right now, like your sinuses, a TOOTH, a UTI, etc? It has always been infection that has stirred up these attacks for me, so I must be sure to treat them promptly and fully when I get one.

During my first attack, the "on again/off again" stirring occurred for 18 months after the initial attack, and during the second one, it lasted for 2 years. I did not do steroids myself, but often-times people do, and that may only serve to interrupt the inflammatory process. Instead I opted to ride it out, because it seems our bodies want to go through that one way or another, and I'd rather get it over and done with (even if the relapse is more severe).

So it may be that the steroids calmed things down initially, but the relapse is back to 'finish the job'. Or, it may be the normal fluctuations that seem to happen for many of us for the (up to) 24 months after the initial relapse ... but if that is the case, for me it never got as the initial event. Or, perhaps it is infection ...

Please be sure you have NO infection going on though, especially with things like your teeth (my third attack was due to inflammation in a tooth and I didn't put 2+2 together at the time).

Cherie

Thank you Dejibou for your response. My psychiatrist has put me on pregabalin (Lyrica) to help with my anxiety disorder and I'll be starting CBT soon. My GP says the Lyrica will also help with the myelitis symptoms and calm
down all my over sensitive nerves.

Cherie, thank you so much for taking the time to respond. Ever since this all started last year I have been reading your posts over and over again as they have been so comforting/encouraging for me.

I don't believe I am suffering with any infection at all. I have had UTI's in the past so I know how they feel. My sinuses are fine, as are my teeth. I truly believe this has kicked off because of my severe anxiety disorder. And we're not just talking about the odd panic attack, we're talking serious screaming the house down, scraping the walls type anxiety. My body really has been under a lot of stress. No doctor or neuro will admit that any of this could be stress related though...typical :-)

I spoke with my GP yesterday and he doesn't feel the need to give me any steroids or refer me back to the neuro. He thinks this is an echo of the original flare and it will settle in time. He did offer me an appt with the neuro if i wanted some reassurance, but he didnt think it was urgently necessary, and to be honest I don't want to go back down that road unless I really HAVE to. So as it stands my good doc (and he is a very special man) has told me to do what I can, rest when I have to, only take short walks if I can manage. He wants me to focus on my anxiety disorder and says the physical stuff will take care of itself. Easier said than done when your having to deal with all these sensations/symptoms!!!

Cherie thanks for the info re the on/off again stirring and the fact that this could flare up again again before recovering fully. This does unfortunately almost feel as bad as the original episode but i cant be sure, there are so many different sensations going on! All i know is that i could sleep for scotland!!! The neuro said it could take up to a year and I have also been told by 2 nurses that if I get tired or stressed it could come back. Cherie I don't have your personal email but I really would be so grateful to get my hands on it to keep in touch with you. I'm new to this forum so how do I go about that? I also notice you are from Vancouver. Beautiful city, I have family in Vancouver and I hope to go back there one day.

Thanks so much again, lots of love, Lisa xxx
Lisalu is offline   Reply With QuoteReply With Quote
Old 05-30-2012, 07:06 AM #39
Lisalu Lisalu is offline
Junior Member
 
Join Date: May 2012
Location: London
Posts: 6
10 yr Member
Lisalu Lisalu is offline
Junior Member
 
Join Date: May 2012
Location: London
Posts: 6
10 yr Member
Default

Cherie, I've just had a lightbulb moment. Before this myelitis first ever flared last year one of my fillings had fallen out of my tooth. It was left untreated for a few weeks until I could see a dentist to have it refilled. It was at that dental appointment when I was sitting in the dental chair that I noticed the strange buzzing sensations in my right foot. This is spooky, I can't believe I've just remembered this! Anyway, this doesn't really explain this latest flare. I'm hoping this is what you said and just another flare to "finish the job". Really looking forward to hearing back from you.

Lisa x
Lisalu is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
lady_express_44 (06-06-2012)
Old 05-30-2012, 09:13 AM #40
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

Welcome Lisa, nice to meet you.

Sorry about your rotten symptoms and hope you feel better soon.
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
transverse myelitis Chele Autoimmune Diseases 9 10-23-2015 02:47 PM
Transverse Mylitis Mommaw New Member Introductions 6 08-27-2008 02:18 PM
Flare Flare Flare ~~~~ moey1997 Reflex Sympathetic Dystrophy (RSD and CRPS) 3 06-22-2008 02:22 PM
First Flare Catch Multiple Sclerosis 5 02-06-2008 02:22 PM
My first flare or? Catch Multiple Sclerosis 6 02-05-2008 01:55 PM


All times are GMT -5. The time now is 09:03 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.