How has Transverse Myelitis affected you?

[Greg Sapp]

How has Transverse Myelitis affected you?

---

[Angela]

I had my TM attack so long ago. When it happened I was an active 17 year old. After six weeks in the hospital, I had to get used to life in a wheelchair. It's been a long 15 years, but I'm getting by. Life goes on, and you get used to new things. The daily stresses of life in a chair are trying, but I cope and do what I can to enjoy life. I work full time as a Spanish teacher, and I'll be getting married this summer. So, the TM definitely affected my life, but life is still good!

[Krista Thompson]

Back in October 2007 I felt really tired in my feet and it grew up to my waist. A lot of my family said I probably had a pinched nerve, but I knew better. I was totally stumped but thought I'd go to the hospital and hope they would just give me some meds and send me home.

I stayed there for 6 days, they talked about MS, Lupus and stress. They said anything could cause this feeling. So, I had an MRI and a spinal tap. Both showed no MS or infections of any kind. But there was 3 spots across my spine. Therefore I was told I had Transverse Myelitis. Then 3 months later I was in for 10 days, only this time it was my whole left side. They have me Gabapentin and of course each time I had steriod treatments also. They did another MRI and another Spinal Tap. Still no to MS or anything else. So, they told me I had Recurrent Myelopathy and that the spots were all over my spine.

So, here we are November 2008 and I was in the hospital 3 times and still No to MS. So, I am now taking Imuran and Gabapentin and I have no follow up with my neuro that I know of.

My life has totally changed, I really think people that are effected like Angela there, are very brave. I feel like I am lazy for not fighting more when I hear stories like hers. My family thinks I will "Get over" this and they don't think I'm really sick. My husband has to be reminded all the time, to the reality of how I really feel. I feel guilty just laying down for a nap once per week.

So, I also have 3 young children, 4, 6 and 8 years old. So life isn't totally bad, just really sucks about 80% of the time.

[Kevin Weilacher]

Krista, First, I'll say I'm a TM newbie (May 14th 2008) and I'll also say that I don't have the Recurrent TM (as of yet anyway), I have one lesion at L4,L5 and S1 and also one on my brain. My TM was sudden onset (within 3 1/2 hours).

Yes, it is hard sometimes when you see others that are as bad or worse off than you like Angela you mentioned. They seem to be "dealing with things", considering. I often wonder how people like that do it.

When my TM hit I was reading up on everything I could find and when I saw that there was a chance at recovery, I was like, I'm gonna work my tail off and get there.. I want to be "normal" again. I'll tell you, I'm as stubborn and bullheaded as they come so I knew I was going to whip this.

Well, that was 6 months ago...I know, not a very long time. I still want to make some recovery, but after dealing with this now for 6 months and dealing with the pain and the fatigue and not sleeping and my internal thermostat being totally out of whack and the spasms and the bowel "issues" and everything else... Some of the wind has unfortunately been taken out of my sails.. This is a hell of a lot harder to deal with than I would have ever imagined.
I still work my butt off in physical therapy and I do everything my Neuro and my Phys. Therapist tells me to do...but, man....

Krista, don't feel like you are lazy for not doing more...it sounds like you have alot on your plate already...with the kids and a family that isn't as supportive as they could be, probably because they truly have NO idea what you are going through.
It would be wonderful if we all had the drive and ambition that some others do, or even the mental attitude to just make the best of the cards they've been dealt.
I'm having a terribly tough time with that myself...I want the "old" me back so bad but my mind tortures me. I try so hard to make little bits of recovery and if isn't going at the pace I want my mind takes over. I get so frustrated and depressed that I stagnate with my recovery. I can't shake that mental thing yet. I spent this whole past Wednesday crying like a fool because I was feeling so defeated. I got up out of bed Thursday and back at it I went.

I guess my point is, you're not alone in the feelings you're having. You have the additional task of 3 young children to take care of which would be tough enough for a "normal" person.
All I can say...is just do the best you can and don't beat yourself up about anything..(I know...coming from me after what I just told you...where I beat myself up all the time)

The only other thing, is your Neuro...are they giving you what you want as far as treatment..? Do you like them..? Do you trust them..? If not, go elsewhere, you owe it to yourself.

Your not in this boat alone, dear... we're here for you.

[Kevin Weilacher]

Angela,
I saw Krista's note where she said she felt lazy for not doing more when she sees stories like yours...
You've obviously made do the best you can in your dealings with TM, although you mention that daily stresses in a chair are trying. I look towards people like yourself for inspiration. You work full time and are getting married which is awesome...congratulations on both accounts.
I commend you on being able to have the mental attitude to make the best of your situation....I am having a very rough time with that right now...and I'm not in a chair. I can walk very short distances with a cane. So, like I said, I look towards people like yourself for that inspiration and the hope that someday I'll have recovered or at least be able to accept any recovery I have gained and make the best of that.
Take care,
Kevin

[Amy]

Im new to this site and TM I'm 26 have a 2 and 7 yrold. I can walk short distances est. around 200 ft. I keep reading how therapy is the key. When this first happen to me my legs gave out and went paralized with in 6 hours. After 4 days of I
V steroid treatments I got some function back. Now after almost 5 weeks my arms are starting to feel heavy numb and like I have knots all over them. Sometimes even spastic. This is all new in the last 3 days. My therapist told me we have to back off in therapy and she thinks I may be having a relapse or I'm still in an attack. They call me stubborn and I'm doing to much. Ifeell like I don't do hardly anything. I feel like I need to do more. But I'm really confused on what is going on. My therapist says I may need more steroids and something for the spasams. I was hoping someone has some answers I called my Doc and he said just take some loratabs. I called back and said I want to see a specialist and they are now trying to get me into IU but said it could take months. Any suggestions??????
I





Kevin Weilacher said:

Angela,
I saw Krista's note where she said she felt lazy for not doing more when she sees stories like yours...
You've obviously made do the best you can in your dealings with TM, although you mention that daily stresses in a chair are trying. I look towards people like yourself for inspiration. You work full time and are getting married which is awesome...congratulations on both accounts.
I commend you on being able to have the mental attitude to make the best of your situation....I am having a very rough time with that right now...and I'm not in a chair. I can walk very short distances with a cane. So, like I said, I look towards people like yourself for that inspiration and the hope that someday I'll have recovered or at least be able to accept any recovery I have gained and make the best of that.
Take care,
Kevin

[Krista Thompson]

Thank you Kevin,

I do trust my Neuro, and I believe that the Imuran is really the only treatment out there for me right now. I only started it 2 weeks ago, so we'll see.

I am not allowed to drive now, due to my fatigue. I actually daydream while driving, which we all know that's not good. So, for me to get out to Physio is not an option right now. I have to try to juggle taking my 3 children to dr's appointments (well, finding someone to take us to them) as well as my (I'm going to spell this wrong) phyciatrist appointments once a month, my Eye appointments (which isn't a big deal, they aren't that often), any other dr's appointments I need to get to, if I get sick or anything. And my youngest has a speech issue, so he's a little behind, not much but enough we have to take him to speech therapy. Oh and he's still in a diaper, and he's 4 years old. I can't get up after him every hour on the hour to clean up any mess if I keep him out of his diaper, and to get him to the po all the time. I just can't do all that. And my mother in law is the worst for telling me I should just do it. Nice for her to say.

anyways, I better stop this rambling on and on, on here. That's another post to be posted later on. lol

Thanks for understanding, Kevin. And Yes, Angela, I really think you are a fighter. Good for you. I only wish I had the energy to even think of fighting like you have.

Take care,
Krista

Kevin Weilacher said:

Krista, First, I'll say I'm a TM newbie (May 14th 2008) and I'll also say that I don't have the Recurrent TM (as of yet anyway), I have one lesion at L4,L5 and S1 and also one on my brain. My TM was sudden onset (within 3 1/2 hours).

Yes, it is hard sometimes when you see others that are as bad or worse off than you like Angela you mentioned. They seem to be "dealing with things", considering. I often wonder how people like that do it.

When my TM hit I was reading up on everything I could find and when I saw that there was a chance at recovery, I was like, I'm gonna work my tail off and get there.. I want to be "normal" again. I'll tell you, I'm as stubborn and bullheaded as they come so I knew I was going to whip this.

Well, that was 6 months ago...I know, not a very long time. I still want to make some recovery, but after dealing with this now for 6 months and dealing with the pain and the fatigue and not sleeping and my internal thermostat being totally out of whack and the spasms and the bowel "issues" and everything else... Some of the wind has unfortunately been taken out of my sails.. This is a hell of a lot harder to deal with than I would have ever imagined.
I still work my butt off in physical therapy and I do everything my Neuro and my Phys. Therapist tells me to do...but, man....

Krista, don't feel like you are lazy for not doing more...it sounds like you have alot on your plate already...with the kids and a family that isn't as supportive as they could be, probably because they truly have NO idea what you are going through.
It would be wonderful if we all had the drive and ambition that some others do, or even the mental attitude to just make the best of the cards they've been dealt.
I'm having a terribly tough time with that myself...I want the "old" me back so bad but my mind tortures me. I try so hard to make little bits of recovery and if isn't going at the pace I want my mind takes over. I get so frustrated and depressed that I stagnate with my recovery. I can't shake that mental thing yet. I spent this whole past Wednesday crying like a fool because I was feeling so defeated. I got up out of bed Thursday and back at it I went.

I guess my point is, you're not alone in the feelings you're having. You have the additional task of 3 young children to take care of which would be tough enough for a "normal" person.
All I can say...is just do the best you can and don't beat yourself up about anything..(I know...coming from me after what I just told you...where I beat myself up all the time)

The only other thing, is your Neuro...are they giving you what you want as far as treatment..? Do you like them..? Do you trust them..? If not, go elsewhere, you owe it to yourself.

Your not in this boat alone, dear... we're here for you.

[Angela]

Don't be discouraged. Remember, I've had 15 years to adjust my life and expectations.

[Krista Thompson]

Thank you Angela.

I'm currently in the hospital again, for the 4th time, now this time they did things a bit different. They did the 3 times of the Steriod IV. And then the MRI, so surprise, surprise, no new lesions on my spine. They say it was probably a small one that is too small to be detected on the MRI.

So, going home tomorrow.

Thanks for being here.
Hope things are well.
Krista
Angela said:

Don't be discouraged. Remember, I've had 15 years to adjust my life and expectations.

[Kimberley]

I had TM on Oct. 4 2004. I've been a c6 complete quad ever since. It hasn't affected me much though. I mean I can't walk and have the same issues as any other quad, but that's it. I still do pretty much anything I want to do just like before. I've also been blind and had CP since birth.

[Amy]

I've been in the hospital since Monday night. They said that I'm having another attack. They also hit me with a bigger dose of steriods too. I've only had TM for 5 weeks and this is my second attack. I was primaraly only effected in my legs but now my arms are numb and starting to get spasiic and freeze up on me me like my legs. Hang in there girl god doesn't give us what we can't handle.






Krista Thompson said:

Thank you Angela.

I'm currently in the hospital again, for the 4th time, now this time they did things a bit different. They did the 3 times of the Steriod IV. And then the MRI, so surprise, surprise, no new lesions on my spine. They say it was probably a small one that is too small to be detected on the MRI.

So, going home tomorrow.

Thanks for being here.
Hope things are well.
Krista
Angela said:

Don't be discouraged. Remember, I've had 15 years to adjust my life and expectations.

[Shirley Gurnell]

Hi Angela and everyone,
My TM 'attacked me in July 2003 at the C5-T2 level, lucky for me it was in the middle of the night and the ER wasn't busy, so had the undivided attention of 2 excellent House Surgeons. I was 'numb' from the nipple line down, but with steroid therapy and 8 days in hospital I was back on my feet, ableit very weak. Even tho I'm in the 1/3rd that have recovered, fatigue is a problem, along with some bowel and bladder issues

[Andrea]

I woke up the begining of december with numb/pins and needles from the waist down, I had been having severe tremors in my hands the month before i dont know if this had anything to do with it but they are a lot better! I have to say my GP was brilliant but the hospitals were not so great, I have been given no medication or physio but luckily after varying stages of mobility issues i seem to be getting a little better slowly on my own. I walked around the house yesterday almost perfectly normally (still felt wierd but to everyone else it looked normal so i thought today i would try going to my local shops. Although my head was telling me to head for the open door of the shop for some odd reason at the last minute my legs seem to get a mind of their own and walk me straight into a closed door! It was all very strange and unexpected. Hopefully the recovery will continue although i am sure there will be plenty more accidents!!