I am a new TM survivor. I got it in november 2011. I still have it. just got on ssdi. I have lots of problems still. People say I look good, but the truth is Im not. I can walk and talk and the Drs. say Im lucky for the extensive amount the lesions covered. No NMO yet. They said it was idopathic medication induced probably. I still have no feeling/sensation I get bad back aches, no energy, flu like symptoms, clumbsy, weak legs, tremmors, spasms, general weakness, I could go on. Is this normal? sometimes I think its in my head. I cant feel bowel and bladder but I have preasure and have no accidents. So you can guess what my libido is like. Im only 42. Anyway Im tired of people saying I look good.Probably more than you wanted.
thanks for listening.

rmp219,

Is what you are experiencing normal? Yes it very well may be; but what is normal for you may not be normal for someone else who has TM/MS/NMO. We all experience symptoms differently in ways that are unique to us, and these manifest according to the locations of demyelination, the type and the severity. TM seems to vary in severity and length of time that one has the effects.

For example, my experience is similar to what you are describing and it is hard to discriminate between what is an acute episode of TM, what is a flare of residual demyelination/neurological damage or both.
I've had a quite a few go rounds with MS/TM/ON and have been dealing with another ongoing relapse of TM/MS, possibly NMO symptoms since 2010. For me, the symptoms of TM are milder than for some, and they last for a year or longer instead of for a few months. Apparently that is my 'normal'.

To outside appearances, we may appear to be quite healthy most of the time. What aren't revealed or so obvious are the accommodations that are, and have been made to create that appearance.
Here are a few things to consider:
- Unless someone lives with us and even then sometimes, it goes unnoticed that there may be sleepless nights curled up in a ball with the pain and spasm of the 'hug' and/or legs doing their own thing.
- Others don't see that it may take us longer to accomplish what they take for granted, if in fact they can be done at all.
- Others don't know that it may take us hours instead of minutes to go from bed in the morning, to breakfast, to the shower and to the door so we can be 'out in the world'.
- It isn't apparent or known that throughout the day we might be dealing with the side effects of fatigue, medication, or the disease manifestations itself.
- Others can't 'see' that maybe we simply can't at times.
- Others can't know what it means to have a body fail or go into a sudden circus of pain and disability unless they have experienced that for themselves.
- Moreover, few can appreciate what it takes to work through these things when what they perceive is an apparently healthy person before them.
- Even if/when there are outward symptoms of gait disturbance or obvious paralysis, often others ascribe these to a past traumatic injury or stroke and not to a progressive, ever changing disease.
- It is all very frustrating and that too is normal.

Considering only these few points, it might be easier to accept that what may be perceived by others is only their perception. As such, it has little bearing on your reality.

Hang in there, look after yourself and do whatever you feel is best to adapt and control symptoms.

With love, Erika

Thankyou for your reply. I figured everyone was different and things were not normal. Its just nice to hear it from someone else. The horrible pain I have with waking up and not sleeping makes me a little stupid at times. Thanks again.

"The horrible pain I have with waking up and not sleeping makes me a little stupid at times."

Ah yes, unfortunately those things can also be quite normal with this stupid disease.
Feel free to vent, whine and complain. We do understand.
With love, Erika

I had an idiopathic myelitis attack in June 2010 with 5 spinal lesions. My neuro told me to try and forget about it, likely a one time occurence. I feel like the luckiest person alive, my pelvis was completely paralyzed, I was on a catheter for 3 weeks, I couldn't stand for more than a few seconds, but I survived it with only mild symptoms remaining.

Does anyone know if myelitis is transverse myelitis? My official diagnosis was myelitis, but I don't understand the difference.

My understanding is that TM is used to describe the effects of spinal cord inflammation that is experienced on both sides of the body. Symptoms usually begin in the feet and spread upwards first with numbness followed by other sensations (for me it is burning pain). That is quickly accompanied by spasms in the affected areas. The symptoms are due to a lesion at a certain level or levels in the spinal cord.

My experience is that it feels like the body is being slowly dipped feet first into cool but liquid wax (deadening of feeling and heaviness), and then it feels like the wax starts to heat up and burn to the bone by the 3rd or 4th day. That sensation stops at a certain level; usually at the abdomen or the chest depending on the spinal levels of the lesion. The sensation of numbness or burning may stay or go, but symptoms usually progress to include muscle spasms and severe cramping in the legs, torso and chest.

The spasms, cramping and pain build in intensity over a period of several weeks and then level off and hang around for a while; or they may begin to abate and pretty much go away after around 8-12 weeks. A bout of TM may leave symptoms behind if there has been nerve/myelin damage once the acute phase is over.

In my case, it can take a couple of years for a cycle of TM to come on and then abate so that what is left becomes stable. I'm coming up to the two year mark on this my 4th go round; but thankfully the symptoms I have experienced are not usually as intense as some people have described experiencing; especially those who experience a bout of TM over the course of a few months.

In comparison, I believe that myelitis is a term to describe inflammation of the spinal cord with variable symptoms depending on where the lesions are. It sounds like you experienced a form of myelitis.

With love, Erika

Yup, the body is having another intensified TM episode and the optic nerves have joined the inflammation-party this time. Double rats. Actually it is triple rats because an Acquaintance has come for a visit as well...

"Knock, knock..."
"Who's there?"
"Enter."
"Enter who?"
"Enter-Itis."


All systems have pretty much been down for the count by early afternoon since Thursday; and since mornings are a complete write off, it only leaves a few hours in the middle of the day when the pain and spasms let up a bit.
Vision is on its own schedule so I can't make any plans until I see what I can see; sometimes it's too blurry to see and others times I can see clearly enough so I can read, drive and get things done. Blinding headaches have also been an issue because along with the pain, it turns cognitive function into something equal to three bean salad.

'Whoopee' is when the vision is a good in synch with a let up in pain/spasm/digestive and cognitive symptoms. I live alone and am the owner/manager of a holistic health care clinic; so that is when I try to get the things done that absolutely need to get done. I learned long time ago to always have a good supply of clean clothes as well as some easy to prepare (enteritis friendly) food on hand at all times; so I'm OK in those departments.

Mostly it has meant managing things at the clinic and rescheduling my patients with one of my associates; as I expect to be stuck at home for a bit yet. Ah yes, the joys of self employment. Calling in sick doesn't work; as I'd be the one who would be both making the call and taking it.
I do have a plan in place for the clinic in the event of absolute emergencies; but this doesn't qualify. Just the same, my associates are all very understanding and helpful when I am not at my best. Thus on Thursday/Friday I managed to get things at work pretty much handled for the coming week without having to be in the office for more than an hour or so. The rest I did from home via the internet and phone as symptoms allowed.

I had the best let up in days during mid-day yesterday and was able to rest and even got outside to do a little light work and weeding in the garden. I harvested a wheelbarrow load of garlic so that I can keep busy getting it ready for braiding later this afternoon if/when the brunt of symptoms drive the body into sitting mode again. Staying busy cleaning and trimming will help to take my mind off of symptoms and because the arms are working OK; just a little clumsy, it is an activity that is not difficult.

I'm doing everything that has helped with managing symptoms in the past as well as anything else that I can think of; so other than that its just a matter of waiting out symptoms, trying to catch a bit of sleep and managing as best as I can.
I will see my PCP tomorrow but that visit is to get a referral for blood work so we can keep a check on electrolytes and liver enzymes/function due to the enteritis flare-up. Medication, other than the occasional evening dose of Baclofen, is not an option at this point also due to the enteritis. Basically if we can keep the liver on task, I will be able to steer clear of the dreaded ho-spit-all.

I've been in the Whoopee state for the last few hours, despite the abdominal/thoracic and leg spasms starting to ramp for their afternoon/evening go round and the guts really acting up for the last 24 hours (cramps & pooping like a duck).
This is the first time in days that I've had things come together enough at the same time to be able to catch you up with this post. No headache, cognition is good and I can see well enough with a large font in Word to do it. I have been visiting the board to read some of the posts and have even posted a bit over these last few days; but it has really been hit and miss. It's been nice to visit with all of you again because I know that you understand the ups and downs of this disease.
Thanks for that and for being here as a place to share with those who care..

With love, Erika