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Transverse Myelitis
Does anyone else on this forum have a diagnosis of Transverse Myelitis?
I am just keen to chat to someone else who might experience symptoms similar to mine,
Sometimes I just feel a bit alone with some of my symptoms which seem quite bizarre at times and scare me so much,.
I am just keen to chat to someone else who might experience symptoms similar to mine,
Sometimes I just feel a bit alone with some of my symptoms which seem quite bizarre at times and scare me so much,.
Edit to my post re the benefits of proofreading.
I meant to say "Hi" all, and the lesions are from T2 - T5
The Multiple Sclerosis Association has a similar forum, but since so many people with MS belong to the TM website I generally visit that one. The moderators are excellent.
I meant to say "Hi" all, and the lesions are from T2 - T5
The Multiple Sclerosis Association has a similar forum, but since so many people with MS belong to the TM website I generally visit that one. The moderators are excellent.
H all.
I happened upon this website during a related search. I had TM in 2001 (T3-T5).
From reading your posts it sounds very much as though you could benefit from checking out the Transverse Myelitis forum website. If you register you can exchange info, ask questions. A lot of people with MS and Devics are also members. It is sponsored by Johns Hopkins University.
All the neuros I have seen have given me a DX of MS but since no lesions have ever shown up on MRI's and spinal fluid is clear, and I have stayed stable all this time, I reject the diagnosis and don't take any of the MS drugs.
This forum has been more help to me than all the neuros, and other doctors I have seen over the years.
I highly recommend it you all.
http://www.myelitis.org/forum/
BTW to Udkas. The banding is common with damage to the spinal cord. It usually occurs about 4 vertebrae below the lesion(s). Mine has never let up over all these years, but yoga and easy swimming help while I am doing them. I take Klonopin (clonazepam) to help relieve that and the various other residual effects.
Again, I highly recommend you visit the TM forum website.
.
I happened upon this website during a related search. I had TM in 2001 (T3-T5).
From reading your posts it sounds very much as though you could benefit from checking out the Transverse Myelitis forum website. If you register you can exchange info, ask questions. A lot of people with MS and Devics are also members. It is sponsored by Johns Hopkins University.
All the neuros I have seen have given me a DX of MS but since no lesions have ever shown up on MRI's and spinal fluid is clear, and I have stayed stable all this time, I reject the diagnosis and don't take any of the MS drugs.
This forum has been more help to me than all the neuros, and other doctors I have seen over the years.
I highly recommend it you all.
http://www.myelitis.org/forum/
BTW to Udkas. The banding is common with damage to the spinal cord. It usually occurs about 4 vertebrae below the lesion(s). Mine has never let up over all these years, but yoga and easy swimming help while I am doing them. I take Klonopin (clonazepam) to help relieve that and the various other residual effects.
Again, I highly recommend you visit the TM forum website.
.
Hope you are well.
I was not left with any disability or weakness, I only had tingling or numbness. I am doing fine right know, I just had this happen in July.I dont know what triggered it, I had part of my Lyme test come back positive, I have a couple unspecified small lesions on my brain. I got hit in the back of the neck with a soccer ball and then a couple days later the tingling started in my feet all the way up to my chest and I had the tight banding sensation around my chest.
You just want to know if what you are experiencing is the saem as someone else in the same situation, not many people get TM I think it is 1400 new cases a year. It is a very confusing experience.
Talk to you soon,
Jen
I was not left with any disability or weakness, I only had tingling or numbness. I am doing fine right know, I just had this happen in July.I dont know what triggered it, I had part of my Lyme test come back positive, I have a couple unspecified small lesions on my brain. I got hit in the back of the neck with a soccer ball and then a couple days later the tingling started in my feet all the way up to my chest and I had the tight banding sensation around my chest.
You just want to know if what you are experiencing is the saem as someone else in the same situation, not many people get TM I think it is 1400 new cases a year. It is a very confusing experience.
Talk to you soon,
Jen
My current neuro said that he can only treat the symptoms anyway as there is not cure for TM or DMD drugs for TM. He reckons my symptoms have just hung around and called it rumbling TM.
He is an expert in MS and TM seeked out all over the world, so I do trust him, the clinic I go to has done a study on TM as well (research).
He has been monitoring me for MS, I was having visits every 3mths with him and I have had an MRI every 12mths but he did one sooner and a LP when I was in a big flare and was going to give me steriods.
My symptoms never ever went away from the initial attack, I always get them coming and going but usually I can see a trigger like I am tired or its hot etc. but this arm stuff seems new, but I have always had some degree of arm involvement but it seems worse but I am under the belief that TM can be like that too and it doesn't mean it was getting worse, I think that was what i was trying to work out from this post, :-), I end up so confused.
I am glad for you that your symptoms have gone away, do you have any weakness or disability from your attack?
Did you have a trigger that you can pinpoint?
Thanks for all your replies, it has been helpful.
Cheers
Udkas (b.t.w. I am 45)
He is an expert in MS and TM seeked out all over the world, so I do trust him, the clinic I go to has done a study on TM as well (research).
He has been monitoring me for MS, I was having visits every 3mths with him and I have had an MRI every 12mths but he did one sooner and a LP when I was in a big flare and was going to give me steriods.
My symptoms never ever went away from the initial attack, I always get them coming and going but usually I can see a trigger like I am tired or its hot etc. but this arm stuff seems new, but I have always had some degree of arm involvement but it seems worse but I am under the belief that TM can be like that too and it doesn't mean it was getting worse, I think that was what i was trying to work out from this post, :-), I end up so confused.
I am glad for you that your symptoms have gone away, do you have any weakness or disability from your attack?
Did you have a trigger that you can pinpoint?
Thanks for all your replies, it has been helpful.
Cheers
Udkas (b.t.w. I am 45)
I am sorry I can not be of more help, This just happen to me in July but I dont have any symptoms that dstuck around, the doctor I see said I have a moderate chance of having MS. Your attack happened so many years ago and now you are having new symptoms and still on going symptoms, I have read that you could be left with some damage that would never get better. I had my symptoms on both sides of my body in the same location at the same time. I would seek out another doctor since you are having new symptoms and there is a spot on your MRI that could be the reason for your new symptoms, what does your doctor want to do for you at this time?
Hi Kelly:
I can see how you thought the banding thing was a heartattack, this terrified me, I feel like i am on a roller coaster, ditto to all of what you have said, but it is kinda nice to know someone knows how I feel.
My Neurologist is a MS Specialist/TM he is apparently recongnised all over the world for his research and his expertise, I do like him and I do trust him. I have had repeat MRIs on T3 machines with and without GAD both brain and full spinal.
I take Gabapentin, vesicare, and a migraine tablet as well. I have the hypersensitivity in exactly the same spot. Wow!!
To Jen:
I had my attack many, many years ago, 14 years ago, but I never fully recovered but now i feel like it's getting worse, so i did worry about MS, I have new symptoms that I didn't have before. I went to a new neuro for a second opinion and he is quite definite that I have TM, he thinks if I had a spinal scan all those years ago it would have showed but my first neuro only did my brain at the time, which seems silly when all my symptoms indicate spinal lesions, I have an area of suspicion on the T3 imaging but nothing conclusive, I had a bad episode a few years back where my privates felt numb but sensation has since came back but it took ages. I just was wondering if other TM sufferers had on going symptoms on and off without actually getting worse.
Does anyone get banding under the rib cage with burning sensation?
Heather it is confusing and frightening when you get new symptoms occuring, my latest episode felt like I was having a heartattack with the worst back pain, then when both my arms went to jelly it just terrified me, to have zip strength in your arms is frightening and then you wonder is is MS or is it a new attack of TM or is it just the old symptoms playing up. I didn't think that was MS as MS is usually one sided and not affecting both sides at the same time, where is TM because it goes across the spinal cord it can cause a lot more problems two both limbs where MS might start in the hand or something like that or the foot. (well at least that is my understanding.)
Thanks guys for replying, we could have msg each other privately but I think this also might benefit other TM suffers or even those who are searching for answers.
Thanks for the links too.
Cheers,
Udkas.
I can see how you thought the banding thing was a heartattack, this terrified me, I feel like i am on a roller coaster, ditto to all of what you have said, but it is kinda nice to know someone knows how I feel.
My Neurologist is a MS Specialist/TM he is apparently recongnised all over the world for his research and his expertise, I do like him and I do trust him. I have had repeat MRIs on T3 machines with and without GAD both brain and full spinal.
I take Gabapentin, vesicare, and a migraine tablet as well. I have the hypersensitivity in exactly the same spot. Wow!!
To Jen:
I had my attack many, many years ago, 14 years ago, but I never fully recovered but now i feel like it's getting worse, so i did worry about MS, I have new symptoms that I didn't have before. I went to a new neuro for a second opinion and he is quite definite that I have TM, he thinks if I had a spinal scan all those years ago it would have showed but my first neuro only did my brain at the time, which seems silly when all my symptoms indicate spinal lesions, I have an area of suspicion on the T3 imaging but nothing conclusive, I had a bad episode a few years back where my privates felt numb but sensation has since came back but it took ages. I just was wondering if other TM sufferers had on going symptoms on and off without actually getting worse.
Does anyone get banding under the rib cage with burning sensation?
Heather it is confusing and frightening when you get new symptoms occuring, my latest episode felt like I was having a heartattack with the worst back pain, then when both my arms went to jelly it just terrified me, to have zip strength in your arms is frightening and then you wonder is is MS or is it a new attack of TM or is it just the old symptoms playing up. I didn't think that was MS as MS is usually one sided and not affecting both sides at the same time, where is TM because it goes across the spinal cord it can cause a lot more problems two both limbs where MS might start in the hand or something like that or the foot. (well at least that is my understanding.)
Thanks guys for replying, we could have msg each other privately but I think this also might benefit other TM suffers or even those who are searching for answers.
Thanks for the links too.
Cheers,
Udkas.
My symptoms are similar to everyone elses. I wonder if they tried doing an MRI on you on the 3T, what would it show.
My symptoms have never completely gone away. A lot of times it feels like I'm trying to walk fast in a swimming pool (especially when I'm walking up hill and up stairs). My legs feel heavy, stiff, and weak. I get off & on pinpricks, numbness, tingling from my pelvis down to my feet.
I also have the wonderful bladder issues. And my skin on the lower inside of my left leg gets hypersensitive to the touch. I have hyper-reflexia, too. And the tight banding has led me to the ER, confusing it with a possible heart attack.
My neuro was set on me having TM. So, I took my MRIs and my reports to a neuro at another place (an MS Center). He reviewed my history, did an exam, looked at my previous MRIs, and ordered more MRIs. And he says I have MS, not TM.
So...now I'm on Copaxone. I also take Bacofen for my muscle spasticity and Vesicare for my bladder issues.
-Kelly
My symptoms have never completely gone away. A lot of times it feels like I'm trying to walk fast in a swimming pool (especially when I'm walking up hill and up stairs). My legs feel heavy, stiff, and weak. I get off & on pinpricks, numbness, tingling from my pelvis down to my feet.
I also have the wonderful bladder issues. And my skin on the lower inside of my left leg gets hypersensitive to the touch. I have hyper-reflexia, too. And the tight banding has led me to the ER, confusing it with a possible heart attack.
My neuro was set on me having TM. So, I took my MRIs and my reports to a neuro at another place (an MS Center). He reviewed my history, did an exam, looked at my previous MRIs, and ordered more MRIs. And he says I have MS, not TM.
So...now I'm on Copaxone. I also take Bacofen for my muscle spasticity and Vesicare for my bladder issues.
-Kelly
How long ago did all this happen? It can take up to two years for recovery.
I will read some and see what I can find out.
Jen
I will read some and see what I can find out.
Jen
Hi Udkas
I can totally relate to everything you say. I too have had a diagnosis of TM. I have been coping with recurring symptoms and new ones which is quite disturbing for a year and a half. One neuro. I saw this year said he was definite I had MS now despite my clear brain scan. He thinks the MRI can remain clear for years in some MS patients and there are others that only show spinal lesions. I get confused by this as I know there is recurrent TM and the drugs used to supress this are different than MS. There is a good book at the link below published by the brain and spinal foundation
http://www.brainandspine.org.uk/informa ... index.html
There is also a TM forum at the following link, you may already know about this link
http://www.myelitis.org/forum/viewforum.php?f=7
Right now I have asked to be referred to a MS / TM specialist neurologist. I will feel better once I see him. It can be very confusing for a lot of us and symptoms difficult to manage. Heather
I can totally relate to everything you say. I too have had a diagnosis of TM. I have been coping with recurring symptoms and new ones which is quite disturbing for a year and a half. One neuro. I saw this year said he was definite I had MS now despite my clear brain scan. He thinks the MRI can remain clear for years in some MS patients and there are others that only show spinal lesions. I get confused by this as I know there is recurrent TM and the drugs used to supress this are different than MS. There is a good book at the link below published by the brain and spinal foundation
http://www.brainandspine.org.uk/informa ... index.html
There is also a TM forum at the following link, you may already know about this link
http://www.myelitis.org/forum/viewforum.php?f=7
Right now I have asked to be referred to a MS / TM specialist neurologist. I will feel better once I see him. It can be very confusing for a lot of us and symptoms difficult to manage. Heather
My TM onset was sudden, I started with pins and needles in my hands and feet but I felt major weakness and strength loss, bladder issues, I felt like I was becoming paralysed, over a period of weeks it got worse, so I went to the doctor who sent me straight to the neurologist and I was hospitalised straight away and given IV steriods, I had a week in hospital with all the tests and a week on the IV.
I left hospital and felt a bit better but it took mths and mths and mths for me to return to normal, infact I never did, I always seemed to get some sensory things that would come and go, but my strength did return, although apparently I do have some weakness in both my arms and my legs according to my neuro, left side is worse tho.
TM is usually one of, for some people it occurs after a virus or a vaccine for me there was no known trigger. If TM does reoccur they look for an underlying cause like lupus or the first attack of TM could have been the beginning of MS.
My Neuro said it is very rare for it to reoccur but he thought for me it had, he is quite definite and confident I don't have MS but he told me that TM can just resurface causing problems, he said it has the ability to cause so many problems because of it's location, so I think for me what I am trying to understand if this happens to others with TM, I don't get why I have these pseudo relapses all the time, and this last one with the back pain and banding was terrifying to say the least.
Cheers,
Udkas.
I left hospital and felt a bit better but it took mths and mths and mths for me to return to normal, infact I never did, I always seemed to get some sensory things that would come and go, but my strength did return, although apparently I do have some weakness in both my arms and my legs according to my neuro, left side is worse tho.
TM is usually one of, for some people it occurs after a virus or a vaccine for me there was no known trigger. If TM does reoccur they look for an underlying cause like lupus or the first attack of TM could have been the beginning of MS.
My Neuro said it is very rare for it to reoccur but he thought for me it had, he is quite definite and confident I don't have MS but he told me that TM can just resurface causing problems, he said it has the ability to cause so many problems because of it's location, so I think for me what I am trying to understand if this happens to others with TM, I don't get why I have these pseudo relapses all the time, and this last one with the back pain and banding was terrifying to say the least.
Cheers,
Udkas.
Can you tell me a little more about how it all started for you, did the doctor find out what caused your TM? I have read that it is usually a one time thing.
Hi and thanks for your replies,
To Jen,
My symptoms sound very similar to yours, but I get loads of shooting nerve pain or I call it electrical type pain, tingling and pain that feels like it runs along my nerves, at my attack my legs felt very heavy, like they had lead in them and I was dragging them, I have had tingling in both legs going up to my belly button, but now I keep getting this banding feeling and the worst back pain up in my chest and my arms keep going weak this terrifies me, as when this happens I have no strength. I also have bladder issues as well, urgency etc.
My symptoms started rather suddenly, came over a period of weeks then gradually got better but I have always been left with sensory issues, like burning sensations, my leg can feel a bit sensitive to touch, some weakness (mild) and a pain factor and a stupid bladder...lol.
With my latest lot of symptoms (this week), I got the most horrible banding around my chest, i almost felt like I was having a heartattack, and the worst, acute back pain, then it radiated down into my arms and fingers but my arms turned to jelly, they came right but I kept having these episodes and it scares me. Both my GP and my neurologist have said it's the Transverse Myelitis!
To Kelly,
my neurologist seems to be certain I don't have MS, I think he is right, my repeat brain MRI are normal, but he said TM can reoccur, and I am not so sure about that but he said that the TM can just come and go when I get tired etc. or too hot, or stressed and has the ability to affect us more, I kinda understand that it's my spinal cord shorting out but I get freaked if it is a new attack of TM affecting another part of my spinal cord or if it is just old symptoms with some new stuff thrown it (just to annoy the crap out of me)..lol. I have periods of remissions followed by my symptoms flaring up again, and then some new ones this time thrown in. Hmmm.
DOes that happen to you guys? What meds are you on, how does your neuro treat your TM. Are you still being monitored by him/her.
Tick, you are right there is several scenarios with TM, you can have acute, sub acute etc. and if you don't get much recovery in 3mths it is unlikely that you will get too much more but having said that it can take up to 2 years, I had numb bits for over 8mths I reckon but gradually the feeling returned.
The weird thing is my spinal MRI is normal too, but my neuro says this doesn't matter he reckons he knows I have had TM and that the MRI is not so good for imaging all the spinal cord.
I have a clear sensory line on examination, below the navel, clonus, hyper reflexia etc. apparently everything on exam corresponds with TM and he tells me I have a lesion at T10, but I must have something higher surely if I have arm problems. My first neuro diagnosed me with MS, but then changed it when my MRI was normal, but I had a week of the steroids in hospital. I just sometimes feel confused, reading my symptoms sound like TM but I just wondered what it is like for others.
CHeers,
and thanks for your replies
Udkas.
To Jen,
My symptoms sound very similar to yours, but I get loads of shooting nerve pain or I call it electrical type pain, tingling and pain that feels like it runs along my nerves, at my attack my legs felt very heavy, like they had lead in them and I was dragging them, I have had tingling in both legs going up to my belly button, but now I keep getting this banding feeling and the worst back pain up in my chest and my arms keep going weak this terrifies me, as when this happens I have no strength. I also have bladder issues as well, urgency etc.
My symptoms started rather suddenly, came over a period of weeks then gradually got better but I have always been left with sensory issues, like burning sensations, my leg can feel a bit sensitive to touch, some weakness (mild) and a pain factor and a stupid bladder...lol.
With my latest lot of symptoms (this week), I got the most horrible banding around my chest, i almost felt like I was having a heartattack, and the worst, acute back pain, then it radiated down into my arms and fingers but my arms turned to jelly, they came right but I kept having these episodes and it scares me. Both my GP and my neurologist have said it's the Transverse Myelitis!
To Kelly,
my neurologist seems to be certain I don't have MS, I think he is right, my repeat brain MRI are normal, but he said TM can reoccur, and I am not so sure about that but he said that the TM can just come and go when I get tired etc. or too hot, or stressed and has the ability to affect us more, I kinda understand that it's my spinal cord shorting out but I get freaked if it is a new attack of TM affecting another part of my spinal cord or if it is just old symptoms with some new stuff thrown it (just to annoy the crap out of me)..lol. I have periods of remissions followed by my symptoms flaring up again, and then some new ones this time thrown in. Hmmm.
DOes that happen to you guys? What meds are you on, how does your neuro treat your TM. Are you still being monitored by him/her.
Tick, you are right there is several scenarios with TM, you can have acute, sub acute etc. and if you don't get much recovery in 3mths it is unlikely that you will get too much more but having said that it can take up to 2 years, I had numb bits for over 8mths I reckon but gradually the feeling returned.
The weird thing is my spinal MRI is normal too, but my neuro says this doesn't matter he reckons he knows I have had TM and that the MRI is not so good for imaging all the spinal cord.
I have a clear sensory line on examination, below the navel, clonus, hyper reflexia etc. apparently everything on exam corresponds with TM and he tells me I have a lesion at T10, but I must have something higher surely if I have arm problems. My first neuro diagnosed me with MS, but then changed it when my MRI was normal, but I had a week of the steroids in hospital. I just sometimes feel confused, reading my symptoms sound like TM but I just wondered what it is like for others.
CHeers,
and thanks for your replies
Udkas.
hi i have a friend with it- he has it bad -he can use one finger to type- its oh -just wished i could help!! tm can leave partialy not complrtly- thats what i understand, so he got it and it hit him hard-but others can recover some.
My symptoms are the same as yours but I have had weakness as well, I don't have full strength in my legs, or my arms,
I seem to have periods of no symptoms and then they return which my neurologist says is normal, hence now I am in relapse but not sure if it is a "real relapse", as TM usually is a one of event unless it turns to MS like Kelly in the post earlier.
Sorry Kelly I will reply in more full later and to both of you, thanks for your replies, I have to go to work now, but the banding you are talking about is what I just had and I thought I had pinched a nerve this time too or that I was having a heartattack...lol
Best get to work, would love to chat to you to more later.
Cheers,
Udkas.
I seem to have periods of no symptoms and then they return which my neurologist says is normal, hence now I am in relapse but not sure if it is a "real relapse", as TM usually is a one of event unless it turns to MS like Kelly in the post earlier.
Sorry Kelly I will reply in more full later and to both of you, thanks for your replies, I have to go to work now, but the banding you are talking about is what I just had and I thought I had pinched a nerve this time too or that I was having a heartattack...lol
Best get to work, would love to chat to you to more later.
Cheers,
Udkas.
Hi I was told I had TM, I had a lesion on C2. I had tinglinging in both feet, legs in my pelvis, a tight band sensation across and around my chest, numbness in arms and fingers were tinglinging, both sides of feet, legs, and arms at the same time.
I thought I had a pinched nerve because I play in a womans soocer league and got hit in the back of the neck with a direct kick with the ball. The doctor told me it was transverse myelitis, my symptoms left as they came all here and gone within a month.
Can you tell me your symptoms.
Jen
I thought I had a pinched nerve because I play in a womans soocer league and got hit in the back of the neck with a direct kick with the ball. The doctor told me it was transverse myelitis, my symptoms left as they came all here and gone within a month.
Can you tell me your symptoms.
Jen
Hi,
I was initially diagnosed with TM about a year and a half ago, because they had found a lesion partially across my t-spine between T9-10 when I was having symptoms. Since then, they have found more lesions - in my c-spine and my brain now, plus I've had ON.
But just about all my current symptoms match TM....
Do you have spinal lesion(s)?
-Kelly
I was initially diagnosed with TM about a year and a half ago, because they had found a lesion partially across my t-spine between T9-10 when I was having symptoms. Since then, they have found more lesions - in my c-spine and my brain now, plus I've had ON.
But just about all my current symptoms match TM....
Do you have spinal lesion(s)?
-Kelly
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