Transverse myelitis anyone?
 

I have once again suggested/asked if there is a chance we could add a section for people diagnosed with Transverse Myelitis to this forum. However, I understand there must be sufficient activity and interest in participation to make it fly. So I thought I would ask . . .

Thanks. I know there are a few of us . . . but how many I am not sure.

http://neurotalk.psychcentral.com/thread49920.html

Here's one

Thanks, Kicker, that is where I learned of two other people here with TM.

As I mentioned on the other TM thread currently going, TM is very, very rare. There are about 1,500 cases dx every year in the US, which amounts to only an additional about 150 cases in Canada's population (less than 1,700 cases/year in all of North America).

If you look at those numbers over say 20 yrs, that's only something like 35,000 people have ever experienced it during that amount of time in history. And (as you mentioned) a good portion of those cases are quite severe, debilitating, leave a lot of disability, etc. Not too many of us interacting are on the forums ... I know that!

Some cases are caused by MS/NMO, and are therefore may be recurring ... but most people (fortunately) only every get one of these attacks (idiopathic, other diseases). If they are left very disabled, we seldom hear from them, and if they heal well they go on with their life. That's what I did the first time I had one and they predicted MS ... I went into denial instead. :)

Cherie

We have a Facebook page just for women with TM and have 144 members from all over the world: UK to Mumbai, India, Australia to Scotland. Oops . . .I just checked . . . sorry, some of them are caregivers. I guess I just thought there might be more here. I find the group very helpful, supportive, and with a great ability to make me laugh.

I would think that when most people want to know more about TM, they googe until they run across the TM Association site. They have a forum there: http://www.myelitis.org/forum/

A certain percentage of people with MS are never told that what they experienced was TM, especially if they are dx fairly quickly. In my case, I had my first TM attack in 1991, and they basically said "you may have gotten a virus in your central nervous system (spinal cord) ... but we are leaning towards this being MS (in the longer run)". I had had other weird symptoms previously, probably a MS attack actually, which was the reason they were leaning towards MS at the time ...

I wasn't told about "TM" per se', and I'm not even sure they had invented that name for it at in those days. When I had my second TM attack, in 2003, they had a name for it by then; Transverse Myelitis due to MS. Effectively it just became "MS" at that point though.

It's kinda like when someone gets Optic Neuritis, that might be all they are told at that point. ON can happen for many various reasons, so unless they have reason to believe it is DUE to MS, they often don't say that. (It is prudent if they do a MRI at that point, but many times they don't too).

So nowadays a person might only be told TM, if they only have spinal cord lesion(s), and then they wait to see if it develops into MS. The stats are so varying in that degree, and I've read everything from 15% to 85% of TM cases eventually end up as MS or NMO.

People with TM have many various diseases though, and depending on the cause, the results will be different. For instance, someone with MS/TM will likely develop brain lesions eventually and have different kinds of attacks in the future; someone with NMO/TM have a more serious longer-term outcome; but someone with idiopathic TM is going to be in a different (one time) situation. Also, the damage we are left with is varying, no matter what caused it.

So it is often even difficult to compare notes on what we are likely to experience, especially over the longer run.

Cherie

So very true and well said Lady,

When I had my first go around with TM starting in 1978 then again in 2000, the physicians and specialists concentrated on the symptoms of ON, regional enteritis and cardio-pulmonary irregularities because the neuro-muscular ones did not involve the typical numbness pattern. In 2000, the severe abdominal/thoracic spasticity that I experienced was attributed to GI and possibly pericardial inflammation. At that time the visual disturbances and lower body spasticity developed after the abdominal/thoracic symptom onset but were not continuous over the next 18 months. It took nearly two years to recover from the episode and it left me with residual lower body spasticity as well as visual problems. That bout was one heck of a weight loss program (not that I needed one), since I had already had part of my intestine removed due to regional enteritis in 1978. For a while there it was looking like I would need TPN because of the extreme weight loss due to malabsorption and subsequent malnutrition.

Only recently has it been postulated that the regional enteritis, digestive and thyroid problems in 1978 were likely due to TM because there was optic neuritis affecting one eye just before that. At that time, no one put these things together under the diagnosis of TM; probably because back then it wasn't recognized as it is now. It was the same in 2000. No one thought to consider TM at that time; yet with the information available now, I expect that the diagnosis of TM would have been made fairly quickly.

Currently it is likely that the diagnosis of RRMS will be changed to Devic's disease because at least 3 repeating patterns of ON and TM occurring roughly at the same time has emerged over the span of 34 years. I have been experiencing those two things again for the last 18 months; this time along with cognitive dysfunction, and although symptoms come and go, there is a cumulative decline in function of the nervous system. Thus a re-evaluation has been undertaken by the neurologist who will make use of diagnostics and information that were not available even 10 years ago.

When one considers the potential for atypical forms of Devic's disease/NMO, MS, TM and ON, as well as individual expressions of demyelination that might occur in just these, it becomes a bit overwhelming to establish a conclusive pattern of symptomology that provides for a definitive symptom pattern or diagnosis of any of them.
Many thanks to the researchers who continue to try because it must be just as frustrating for them as it is for us to make sense of all the newer information and guidelines.

As it appears now, it seems that TM, just like ON are being be perceived as symptoms that may indicate newly named syndromes and/or particular forms of demyelination; all depending on individual patterns of occurrence and recurrence. With new information coming forward in the fields of neurology and demyelinating diseases, it isn't surprising that for those of us who have had symptoms for many years, that re-evaluation and changes in diagnosis are being undertaken. Hopefully as research continues, better potentials for treatment will also be forthcoming.
If only for that reason, I think that it is important to continue to undergo diagnostic evaluation because the results may provide more study information for the benefit of those newly diagnosed with demyelinating disorders.

Similarly sharing our individual experiences may provide additional information to researchers and those affected alike.
Thank you so much to all who do so.

With love, Erika

Has NT changed the capability so that a person can't alter their posting after "X" long? I just realized I made an error in my prior posting and have corrected it above ... but it would have been nice to be able to correct the original posting too.

Hi Erika, and nice to hear from you. You are way up in Quesnel, eh?

Did you have a look at the other thread that is going on TM ... it's an old one that Lucylu resurrected recently? Lefthanded had mentioned he had stomach/intestinal/bowel issues (Ulcerative Colitis and/or Crohns), and I too have UC. Now you are mentioning it as well ...

Do you find that infections of any kind will set things off for you?

Has your neuro contemplated sending away for NMO testing out of Mayo. As I mentioned in the other thread, I opted out of the testing, since it won't change my approach anyway.

I had ON with the last two TM attacks, which kinda makes sense because the inflammation was in my upper C spine and brainstem. I have not had bi-lateral ON though, which is more indicative of NMO. Both of my severe TM attacks were reasonably typical and predictable, with numbness in most of my body as well as all the other fun symptoms. :D

Cherie

I fixed it in the original posting for you, Cherie. :) You've got 24 hours to make any changes.

Hello Cherie,

Yes, I have read that thread and thankfully I have not had the severity of symptoms that Lefthanded describes. In my case the course of the three severe bouts have been more drawn out with periods of leveling off before new symptoms come on or the ones that were leveled off get worse again. I had TM, OT and other MS symptoms for around a year the first time in 1978, then for two years starting in 2000 and now coming up to 18 months on this go around.

The regional enteritis symptoms come and go but mostly it has been kept under control since 1978 with dietary restrictions. We found out 25 years ago during a bout of ON that my system can't handle prednisone due to liver compromise. OTC anti-inflammatory meds will sometimes set it off if I take them for more than a few days in a row. Both steroid and non-steroidal anti-inflammatory meds send liver function into the tank and the liver enzyme tests are all over the charts within a week. Once that happens it takes quite a bit of effort to get things back to my normal so I try to stay away from that stuff.

The only thing that seems to bring bouts on is letting regional enteritis get out of control and that usually is due to dietary sins of commission or omission. I occasionally still find out the hard way that poorly tolerated items have been in the food that has been served from time to time; and for the most part it seems to have been unintentional due to not checking labels during food preparation. Thus, I don't ever eat at other people's homes unless I've been helping to prepare the meal and that limits most shared meals to eating with family or my congregation. Similarly I seldom eat at restaurants or purchase prepared dishes and generally stay away from anything that I haven't prepared myself. The risk of having a reaction is just too great.
The abdominal surgeries that have been done (intestinal resection, gall bladder removal, adhesion release), along with invasive procedures like liver biopsy, have never gone well. There is always the hug and paralytic ileus following them. It is still uncertain if TM was involved in those post surgical and investigation reactions because by the time that those surgeries needed to be done, things were pretty messed up with organ and abdominal wall muscle function anyway.

I have found that uncontrolled severe pain can make many symptoms of demyelination worse; but again I don't know if TM is a part of that. An allergy to morphine and some sensitivity reactions to other pain meds cause paralytic ileus, subsequent abdominal distension with abdominal spasm and pain; and also drive pituitary/thyroid function into the ditch. That places some limitations on what can be used to control post surgical-type or severe pain. Remaining still or movement, meditation, massage, acupuncture, ice or heat have all proved helpful for different instances of severe pain, so I just choose what seems to be best for a particular instance and wait it out. Medication is a last resort.

I'm not sure about infections making symptoms worse because I don't actually experience much of that sort of thing. The last flu was in 1989 and I remember the year because it is so rare for me to get it. Have had a couple of colds but only a couple in over 30 years; and if I remember correctly they weren't associated with bouts. I haven't had any oral infections or root canals either; although I did have a lot of tonsil/ear infections as a child. The most severe infection I've ever had was peritonitis and that was in 1978 when I had surgery for enteritis (preceded by ON).

Yes, the neuro ordered the blood test for NMO but I'm not sure if it is being sent to the Mayo clinic. It is definitely being sent somewhere, or is being handled differently than the other blood tests that were taken because there was much ado about setting the tube up with correct labeling in the lab.

It sounds as though you also avoid most medication because of the adverse reactions, so I expect that even if NMO testing comes back positive, I will continue to do so as well. It is very much 'the devil that you know' thing isn't it?

With love, Erika

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