Transverse Myelitis Member Question

[sllowe]

Hbananas and Udkas and anyone else who has been dx'd with TM (transverse Myelitis), have we ever asked you to post all you go through due to TM? From a member prespective?

You experience many of the same dysfunction -
You go throught much of the same testing -
Even when stable, you experience much of the same chronic limitations, and issues.

If you have time - would love to have this go-to thread!
Whatcha think?
-shell

[Udkas]

Bumping this back up for the person asking about Transverse Myelitis.

[Udkas]

I do like my neuro and he is very approachable and does always try to answer my questions and he is always kind and listens to what I have to say and never makes me feel like I am wasting his time or what I have to say is not important but I really don't believe at this time he can do any more than monitor me.

I am stable and have been for a long time, if I did have MS I am sure with the different things something would be showing up by now.  I think I can contribute a lot of my symptoms to migraine and the other half to the TM.  I don't doubt that I had something "big" happen a long time ago, at the time I kept a diary for the other neuro and I still have it to refresh my memory.  

In Australia I need to have a brain lesion to be treated on DMDs and I wouldn't take them even if offered to me unless I felt certain my disease course was progressing.  I too have unanswered questions but unless I want to spend an evening with my neuro I guess I won't fully understand the lot as it is very complex.  I am still being monitored and can see him anytime I like so he has never fobbed me off.  I am still a wee bit concerned about my painful spasms and the spasms in my hand but we will see what happens.  Providing nothing is getting worse I will cope with my symptoms and treat them as they occur.

I have a friend who has MS and has only spinal cord lesions the interesting thing is that their lesions (they had one on the thoracic and two in the cervical have all disappeared, their symptoms almost mirror mine.  They are a friend of my daughter's.  They have refused to take DMDs, don't know why as if I had evidence I would take them.
Apparently the cord is very difficult to get good images of, so MRI does not always show the entire picture.

Cheers,
Udkas.

[Nancy T]

Udkas--thanks for the further information. Although I know you wish you had a definite, overarching explanation/diagnosis for all your symptoms and relapses, I guess from a practical standpoint that is not the most important thing--as long as you are not missing out on a DMD if that would be appropriate. But if your neuro wouldn't treat you with a DMD regardless, it doesn't matter.

The MOST important thing is that you have a neuro that you trust and who follows you closely--and you do indeed seem to trust him and he has followed up with a lot of testing. It is hard to live with the lifelong frustration of not knowing for sure what is wrong, but I guess many people do have to do it! I am glad you have a good neuro, anyway. :)

Take care,

Nancy

[Sumanadevii]

Nope, Wobbly, weak legs came later.  This was knowing my legs were there but being unable to move them.  Like the message wasn't getting to my legs.  The legs felt strong, holding me but unable to move them.

I feel like I have gotten us off topic here.  So, letting it go.  There may be some with TM that will need this board.  Thanks for all your answers.

[Wobbly]

Hi there, I have time when my legs will just stop and not want to move again.  I could be shopping, using a cart to help me walk and the top part of my body feels fine (as fine as it could be) and then all the sudden my legs, mostly left side will just not want to move, it's like I feel too weak to move them?  

this happens once in awhile to me and I always forget to mention it to my Neuro.  I should still write things down even though I'm Dx.  

I worry now when I go out shopping or doing any walking with my cane or cart.  
I alway try to have my wheelchair available.

take care
wobbly

[Sumanadevii]

Dang, hit post before I was finished.. My hands aren't cooperating today.  

sllowe, I am not doubting I have MS...I am just wondering if it wasn't at one time TM?  and TM left damage behind.  I was never given answers on not being able to move my legs at times.  Example, I would be on a ladder and become frozen...or in line at a store paying my bill then unable to move away to take my cart out.  I just had to stand and wait for it to pass...

Sure never heard anyone with MS describe this.....

[Udkas]

Hi Nancy,
I did ask him about the new symptoms and he said that because the spinal cord feeds basically all your body that you can get huge variations and new symptoms that doesn't mean a new attack, just basically a short in the circuit.

Sometimes I agree with you Nancy but it's the best explanation I have at the moment.
My previous neuro who diagnosed me with MS said that I had EVIDENCE on clinical examination of two separate areas of attack.

I think 70% of TMs who have the sub acute go on to develop MS if they have a brain lesion, or it might even be higher than that.

I think what the distinguishing thing is that with MS you have a small area as it might start in one foot or one hand where with TM because the lesion goes right across your spinal cord both legs are affected and often you get pain like bolt like pain or radicular pain, I had all this and lower back pain at onset too, I actually thought I had hurt my back.  I think and this is only what I think is because the lesion goes right across it can cause more problems to more areas, so when you are extra tired maybe a new symptom might surface.  Yes I did have a new symptom and one that scared the jeebies out of me, I had a crushing affect under my rib cage and lack of strength in my arms, I have not had a cervical MRI since this incident but things have since returned to my normal level, at the time the weather was hot, really hot and I was very tired.  I do get migraine as well that causes sensory symptoms and weakness as well, plus sometimes with migraine I feel like I am having a stroke (yay) love that one.

Udkas.

[Sumanadevii]

sllowe, not one lesion on the brain....

[sllowe]

Nancy - Your right - some TM patients to end up ultimately being dx'd with MS once the evidence changes. Remember, MS is not so much a dx of exclusion as it is one of solid evidence, and clinical detmination.

-shell

[sllowe]

Suma - do you have lesions on the brain too? That's probably why...

Check out this project RESTORE - good info re TM here.

TM is one of a group of disorders in which the immune system becomes abnormally activated and “attacks” and injures the nervous system. The inflammation is confined to the spinal cord and usually occurs only once.

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/project_restore/conditions/

Couple points I pulled from this link above

...TM is largely a “one-time” disease (monophasic) that involves only the spinal cord. MS is always a “many-time” disease (multiphasic) that involves the brain, optic nerves and spinal cord

...TM is a unique model system to study novel neuroprotective and neurorestorative therapies. This is because of the monofocal and monophasic nature of the disease. Where all injury and subsequent disability in TM can be attributed to one lesion in the spinal cord, in MS it is a cumulative burden of disease based on the number and location of lesions.

Hope this helps..
-shell

[Sumanadevii]

and again...I want to add and can't edit (how I wished we had an edit button) that not ONE doctor in all my running for help..screaming in pain from my lower back...ever ever mentioned TM.  WHY?????  

Makes me so mad that so many put it off ...blaming it on my age and the type of work I did....gezzzzz...What is wrong with the medical professionals????

[Sumanadevii]

Heck, I wasn't sure what it was (not usual for me not to understand or comprend something) so I looked it up.  It sure sounds like exactly what I have!!!  However, I know today (and too many neuros have agreed) that I know it is MS.  I am wondering..which comes first the chicken (TM) or the egg (MS)?  Anyone know??

[Nancy T]

I'm sorry, Udkas, but I still don't get it . . . I'm not meaning to be tiresome, but isn't the definition of MS when you have two attacks on the CNS separated in space and time?

Well, if your neuro thinks you have had two separate attacks of TM, at different times (to account for your leg symptoms on the one hand and your Lhermitte's on the other hand), what is the difference between that and MS?? Both of them are inflammation/damage to myelin, correct?

And if they don't know the UNDERLYING CAUSE of TM (or do they?), and you have two different attacks of it in different places, how can they be sure it's NOT MS? Isn't it MS by definition? Regardless of whether you have the brain lesions?

Not trying to bug YOU :) ... I am just trying to get it straight in my mind how your neuro can distinguish between TM (when you've had it at least twice, apparently) and the formal, basic definition of MS (two attacks in at least two different places).

Nancy

[sllowe]

Thanks, Udkas! This will be a good discussion we can add to and bump up when needed

And, here is a link to Hbananas journal.
http://www.medhelp.org/user_journals/show/21142/Diagnostic-journey

[Udkas]

Hi Guys,
Great idea Shell.  For those that are not aware of what Transverse Myelitis is I will give you a quick background.  TM is when inflammation occurs over both sections of the spinal cord (hence the name transverse).  It can be sudden in onset and can occur over a period of a couple of hours to being sub acute and happen over a period of 1 to 4 weeks.  

For me many of my symptoms are very much like what people experience who have MS, especially those who have spinal cord lesions and treatment is the same for my symptoms.  Because I have TM and I am stable they just manage the symptoms.

My symptoms have included nerve pain, pins and needles, weakness in legs (feeling like they have gone to sleep) sensory issues and bladder issues. I also get lhermettes.  Stress, fatigue, illness and heat can all worsen my symptoms.  My medication has included gabapentin, baclofen and vesicare to manage my symptoms.

Cheers,
Udkas.