I)onna----numbness, Transverse Myelitis

[Guest guest]

When I had my Transverse Myelitis attack in 97 I went totally numb on half my body just like you described. It was from just below my left breast and like a line was drawn down my middle. The entire left side from breast to toes was totally numb. It was not the loss of feeling kind of numbness but was the total, TOTAL numbness. I couldn't feel hot or cold and I lost bladder control totally. It's was bad. Is that the way it was for you? My primary care wouldn't give me a referral to a neuro for three weeks so I didn't get IV Solumedrol when it was needed. My neuro said if I had been able to have the solumedrol when it first happened I may not have had the lasting problems I have had. Since that TM attack I have never been without numbness

and other "problems". But things get better and then get worse but it's always there.I am babbling big time. I am under the effects of steroids! lolhugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Fri, January 7, 2011 8:23:15 AMSubject: Re: started prednisone and other news (LDN)

Sharon,I'm sooooo very sorry to hear that you're having some pretty nasty problems with the MonSter right now.. I only went half numb -- left side, from just under my left breast.. and split right down the center of my body, down to the tips of my toes -- yeah, only half of my pubic area went numb.. but it went numb with the rest of me, from belly button around to the spine.. I hated that feeling.I sure hope that you start feeling better soon. I also really hope that the LDN will work wonders again as well, and if it wasn't the LDN years ago.. I will pray that you have the same results this time as you did years ago, even if it isn't the LDN.. I don't see why it wouldn't, just because there has been no official "studies" or whatever to prove that it does. All the other things that are available to we MSers.. not everything works for everybody, what

works for me, might not work for you and vice versa.. Even the CRAB-T meds, don't work the same for all of us.. I haven't been around much lately (got a ton of mail to catch up on the laptop).. but I've also been experiencing loads and loads of fatigue.. I finally got my "approval" letter for the Provigil -- it was approved until the year 2099!! -- so a day or so before Christmas I called , the neuro-nurse, apologized for being a pain, right before they left for the Christmas weekend, but that I'd really like to have a script for the Provigil called in, so that I could enjoy the weekend anyway... I didn't realize that the prescription had changed, though when it was picked up, and I saw what the insurance company was billed for the medication I nearly had a stroke!.. I didn't realize until last week sometime, that he changed the script, from being 1 200mg pill per day, to 2 200mg pills per day.. first in the morning.. second at 1 in

the afternoon (and the bottle states that clearly on it).. So there were SIXTY pills in that bottle instead of 30.. Before this, I broke one of the 200 mg in half, took the first half in the morning, and if that didn't do the complete job, I'd take the second half.. I just started to do as told yesterday.. and I was able to stay awake the whole day!!!.. but by 10:30 last night, I was most definitely ready for sleep.. So maybe, I'll be able to get caught up with my email and rejoin the living!HUGS to you Sharon... and I will say at 13.5 below.. I'm certainly glad I'm not where you are.. when the temp drops outside, even though it's 72 in here.. I'm reaching for the thermostat to crank it up, cause I'm freezing!..|)onna

From: Sharon

To: Group

Sent: Wednesday, January 05, 2011 10:43 PM

Subject: started prednisone and other news (LDN)

I started the Prednisone today. I hope by tomorrow I will be seeing a difference. The numbness spread from my legs/feet up to my ribs, lips and pubic area. Of course, I have had numbing in all those places before so I'm not freaked out or anything. Just being cautious and concerned. I talked to my doc today to let her know what is going on. I am also having some mild optic neuritis pain and some mild face pain. I have decided I will go back on LDN. I was in pretty bad same MS-wise before starting LDN and then after being on LDN for a while I came out of the MS-funk. I was never sure it was the LDN and I quit it because I was having oral surgery and pain pills. I just never restarted the LDN. I felt good for a long, long time but then last summer I had two exacerbations. I concluded it was because of the summer heat. Well there isn't any summer heat now! (13.5 below when this started:) So today I dug out my bottle of LDN and I am going to start it again. I hope it works miracles for me. Of course, there is always a chance my improvement years ago had nothing to do with LDN. I am crossing fingers/eyes and other pieces and parts!hugs to each of you

SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

[Guest guest]

Jeepers, Sharon. You're not babbling at all! That must have been a real scary experience for you. Wish I were on 'roids;my house REALLY needs to get clean. I'm having a birthday party for my son who turned 11 on the 4th, and lots of kids coming. Still have debris left from Christmas. I 'undecorated' the tree yesterday, and my son and I dragged it to the curb today. Now who's babbling? <grin>love to all,KateFrom: Sharon

To: MSersLife Sent: Fri, January 7, 2011 5:27:11 PMSubject: I)onna----numbness, Transverse Myelitis

When I had my Transverse Myelitis attack in 97 I went totally numb on half my body just like you described. It was from just below my left breast and like a line was drawn down my middle. The entire left side from breast to toes was totally numb. It was not the loss of feeling kind of numbness but was the total, TOTAL numbness. I couldn't feel hot or cold and I lost bladder control totally. It's was bad. Is that the way it was for you? My primary care wouldn't give me a referral to a neuro for three weeks so I didn't get IV Solumedrol when it was needed. My neuro said if I had been able to have the solumedrol when it first happened I may not have had the lasting problems I have had. Since that TM attack I have never been without numbness

and other "problems". But things get better and then get worse but it's always there.I am babbling big time. I am under the effects of steroids! lolhugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Fri, January 7, 2011 8:23:15 AMSubject: Re: started prednisone and other news (LDN)

Sharon,I'm sooooo very sorry to hear that you're having some pretty nasty problems with the MonSter right now.. I only went half numb -- left side, from just under my left breast.. and split right down the center of my body, down to the tips of my toes -- yeah, only half of my pubic area went numb.. but it went numb with the rest of me, from belly button around to the spine.. I hated that feeling.I sure hope that you start feeling better soon. I also really hope that the LDN will work wonders again as well, and if it wasn't the LDN years ago.. I will pray that you have the same results this time as you did years ago, even if it isn't the LDN.. I don't see why it wouldn't, just because there has been no official "studies" or whatever to prove that it does. All the other things that are available to we MSers.. not everything works for everybody, what

works for me, might not work for you and vice versa.. Even the CRAB-T meds, don't work the same for all of us.. I haven't been around much lately (got a ton of mail to catch up on the laptop).. but I've also been experiencing loads and loads of fatigue.. I finally got my "approval" letter for the Provigil -- it was approved until the year 2099!! -- so a day or so before Christmas I called , the neuro-nurse, apologized for being a pain, right before they left for the Christmas weekend, but that I'd really like to have a script for the Provigil called in, so that I could enjoy the weekend anyway... I didn't realize that the prescription had changed, though when it was picked up, and I saw what the insurance company was billed for the medication I nearly had a stroke!.. I didn't realize until last week sometime, that he changed the script, from being 1 200mg pill per day, to 2 200mg pills per day.. first in the morning.. second at 1 in

the afternoon (and the bottle states that clearly on it).. So there were SIXTY pills in that bottle instead of 30.. Before this, I broke one of the 200 mg in half, took the first half in the morning, and if that didn't do the complete job, I'd take the second half.. I just started to do as told yesterday.. and I was able to stay awake the whole day!!!.. but by 10:30 last night, I was most definitely ready for sleep.. So maybe, I'll be able to get caught up with my email and rejoin the living!HUGS to you Sharon... and I will say at 13.5 below.. I'm certainly glad I'm not where you are.. when the temp drops outside, even though it's 72 in here.. I'm reaching for the thermostat to crank it up, cause I'm freezing!..|)onna

From: Sharon

To: Group

Sent: Wednesday, January 05, 2011 10:43 PM

Subject: started prednisone and other news (LDN)

I started the Prednisone today. I hope by tomorrow I will be seeing a difference. The numbness spread from my legs/feet up to my ribs, lips and pubic area. Of course, I have had numbing in all those places before so I'm not freaked out or anything. Just being cautious and concerned. I talked to my doc today to let her know what is going on. I am also having some mild optic neuritis pain and some mild face pain. I have decided I will go back on LDN. I was in pretty bad same MS-wise before starting LDN and then after being on LDN for a while I came out of the MS-funk. I was never sure it was the LDN and I quit it because I was having oral surgery and pain pills. I just never restarted the LDN. I felt good for a long, long time but then last summer I had two exacerbations. I concluded it was because of the summer heat. Well there isn't any summer heat now! (13.5 below when this started:) So today I dug out my bottle of LDN and I am going to start it again. I hope it works miracles for me. Of course, there is always a chance my improvement years ago had nothing to do with LDN. I am crossing fingers/eyes and other pieces and parts!hugs to each of you

SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

[Guest guest]

Wow Sharon, that's what my first attack was like except the right side. Another thing that I recall beside generally feeling terrible was excessive salivation. There I was with a 6 week old baby, a 2 and 4 year old, and a husband named ... drumroll .... Rob who was never home, said it was just my nerves, "everything will get better", etc ad nauseum. Breastfeeding was so difficult. I was afraid I'd drop her.

Finally when I began speaking gibberish, he agreed to take me to Emergency. I think he was afraid I'd had a stroke. Eventually I was seen by the internal medicine dr I have now but even then he didn't rx steroids, saying it was too late. Weird part is I think that's when my writing 3 for C, 5 for E and backwards began. Yikes, dyslexia is yet another potential side effect of ms .. hugs, Cait

started prednisone and other news (LDN)

I started the Prednisone today. I hope by tomorrow I will be seeing a difference. The numbness spread from my legs/feet up to my ribs, lips and pubic area. Of course, I have had numbing in all those places before so I'm not freaked out or anything. Just being cautious and concerned. I talked to my doc today to let her know what is going on. I am also having some mild optic neuritis pain and some mild face pain. I have decided I will go back on LDN. I was in pretty bad same MS-wise before starting LDN and then after being on LDN for a while I came out of the MS-funk. I was never sure it was the LDN and I quit it because I was having oral surgery and pain pills. I just never restarted the LDN. I felt good for a long, long time but then last summer I had two exacerbations. I concluded it was because of the summer heat. Well there isn't any summer heat now! (13.5 below when this started:) So today I dug out my bottle of LDN and I am going to start it again. I hope it works miracles for me. Of course, there is always a chance my improvement years ago had nothing to do with LDN. I am crossing fingers/eyes and other pieces and parts!hugs to each of you

SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

[Guest guest]

Gee whiz, Cait. What a memory! How awful. I can't even imagine having such wee ones with so many physical issues!I vaguely recall you saying you only have a PCP and not a neuro. Wish you could be seen by a specialist.love to you,KateTo: MSersLife Sent: Fri, January 7, 2011 6:34:58 PMSubject: Re: I)onna----numbness, Transverse Myelitis

Wow Sharon, that's what my first attack was like except the right side. Another thing that I recall beside generally feeling terrible was excessive salivation. There I was with a 6 week old baby, a 2 and 4 year old, and a husband named ... drumroll .... Rob who was never home, said it was just my nerves, "everything will get better", etc ad nauseum. Breastfeeding was so difficult. I was afraid I'd drop her.

Finally when I began speaking gibberish, he agreed to take me to Emergency. I think he was afraid I'd had a stroke. Eventually I was seen by the internal medicine dr I have now but even then he didn't rx steroids, saying it was too late. Weird part is I think that's when my writing 3 for C, 5 for E and backwards began. Yikes, dyslexia is yet another potential side effect of ms .. hugs, Cait

started prednisone and other news (LDN)

I started the Prednisone today. I hope by tomorrow I will be seeing a difference. The numbness spread from my legs/feet up to my ribs, lips and pubic area. Of course, I have had numbing in all those places before so I'm not freaked out or anything. Just being cautious and concerned. I talked to my doc today to let her know what is going on. I am also having some mild optic neuritis pain and some mild face pain. I have decided I will go back on LDN. I was in pretty bad same MS-wise before starting LDN and then after being on LDN for a while I came out of the MS-funk. I was never sure it was the LDN and I quit it because I was having oral surgery and pain pills. I just never restarted the LDN. I felt good for a long, long time but then last summer I had two exacerbations. I concluded it was because of the summer heat. Well there isn't any summer heat now! (13.5 below when this started:) So today I dug out my bottle of LDN and I am going to start it again. I hope it works miracles for me. Of course, there is always a chance my improvement years ago had nothing to do with LDN. I am crossing fingers/eyes and other pieces and parts!hugs to each of you

SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.