Re: [TMIC] Losing my mind!
Hi Rob, I'm confused. I received this e-mail but I thought it was from the TM mailing list, not a "site" as everyone seems to think. To get off this "mailing list" all one has to do is unsubscribe by sending a message with unsubscribe in the subject line and in the body of the message if it works as other mailings list do. If someone wants to send a personal reply only to the person who sent the original e-mail, not to everyone on the whole list, all you do is click on "Reply to sender" -- not on "Reply to all". I don't receive many e-mails per day from this mailing list so not sure why you are receiving about 100 e-mails. I used to access the "TM website" but you have to physically access that website with a password. I finally stopped going on it each day because there were hundreds of postings to read and I had to use all my energy in order to try to try and improve my own situation. If you have "posted" messages to that website, people who have read them may be sending e-mails to you. I gather others have also joined a "Facebook" page. I have not done that but, if you have, there could be others getting in touch with you -- I guess?? I'm not up with Facebook. You are probably also generating lots of e-mails because of being in charge of a support group. You have to be commended for doing that to help others when you have your own TM residual problems to deal with. Anyway, do I have all this straight or am I really confused? Regards. Louise - Original Message - From: Robert Pall To: tmic-list@eskimo.com Sent: Tuesday, December 06, 2011 10:24 AM Subject: [TMIC] Losing my mind! I really need help. Everyday I end up with 100 emails from "people living with TM", TM Folks and a little bit of the original TM group. I do not want to chat about everythingI want to talk about TM and TM only. I realize I am lucky that I am not totally disabled (I can walk and drive)and I understand where some of the TM'rs are in front of their computer all day long. I end up deleting almost all of my mail due to the volumethis does not help me nor the originators of the emails. Maybe it is just me ...but wouldn't it be better to have just one TM site as well as far less confusing? I have had TM for more than 14 years and I head up the New Jersey TM support group.this original TM site has given me more good advice than I could have possibly hoped for.but now when I go on the other sites I no longer know the history of the tm patient which does not allow me to answer most of the questions put forth. I am probably just venting I just want to know what others feel and what we should if anything do about it! All the best! Rob in New Jersey
Re: [TMIC] Fwd: MY STORY
Hi Dalton, I'm really confused because, as far as I know (and my neurologist concurs), TM is not a disease unto itself but an attack of inflammation that is caused by something else -- which could be a disease such as MS, Lupus, West Nile Virus... or they may not be able to find a cause and the attack is then labelled ideopathic. Quite a large number (can't remember the %) of the ideopathic group have had a viral or bacterial infection prior to the inflammatory attack. In my case they could not determine a definitive cause but they think it may have been triggered by a sinus infection I'd had a couple of weeks before. Somehow something got through the brain/blood barrier and attacked the spinal cord at T12/L1. Of course, the immune system doesn't help as it identifies a problem which it tries to fix so it attacks the same area making the situation worse. My neuro agrees that TM is not a disease so we are not living with a disease called Transverse Myelitis (Transverse simply means across the spinal cord and Myelitis means inflammation) but with the aftermath of that inflammatory attack on our spinal cords, i.e., neuropathic pain and everything that includes. So, when you say you "caught" the Indian form of TM, that is completely contrary to everything I've been told during the past six years. I don't write in often because everyone talks about living with this disease called TM and I believe that's because many doctors really don't understand the process themselves and don't explain it well enough to their patients. Let's face it when we have lived through this traumatic situation, and are now suffering on a daily basis, it is difficult to sort it all out. I've come up with an analogy of driving to work one day and having a car accident that injured my spinal cord. I say that now I'm living with the results of that day when I was struck down with the paralysis. That seems to put it into perspective for my family and friends. Luckily, I'm no longer paralyzed but I was unable to continue working and can't travel or do a lot of the things I used to enjoy or hoped to enjoy in retirement. I'm one of the "walking wounded". I have a lot of deficits and various types of neuropathic pain, stiffness, etc. I think the worst thing for me is the debilitating weakness that consumes the core of my body. There is no pattern -- it comes suddenly and leaves when it wants to. Then I pick myself up and carry on. I call it "riding the wave". For some unknown reason, for the past week I've had horrible muscle spasms that have attacked both my legs (mainly during the night) from my toes and including my calves and hamstrings. I'm hoping it will pass soon. I have even been hit with them during my exercises in the morning. I work out about 1 and 1/2 hours a day to keep going and a spasm even hit my right calf when I was on the recumbent bike and I had to stop. That has never happened before. I've read all your e-mails over the months with interest and have felt very sorry for what you are going through. It sounds like you have good support from your family and friends and I hope you can keep "riding the wave" with courage. Regards. Louise - Original Message - From: Dalton Garis To: john snodgrass ; tmic-list@eskimo.com ; deer...@aol.com Sent: Saturday, August 13, 2011 4:15 PM Subject: Re: [TMIC] Fwd: MY STORY My Neurologist says I happened to catch the Indian variety of TM-we have so many Indians and other South Asians working here as expats. The Indian variety is actually new and as yet not fully described. The Japanese form is what afflicts most, unfortunately, since it most always paralyzes and comes on very quickly. I am very happy nonetheless. These lost says are OK for me now, since I am in my 60's and have no physical goals or burdens to deal with, now that I can no longer work as Associate Professor and lecturer. Never mind; lots of stuff to write, study and think about. And I got a mandolin to learn to play. My brother plays and we will make music together, as we did when we were all kids. That's what you did in those days, we made our own music. My mother sang, Dad played his mandolin, my sister played the piano, and my brother was on the guitar. So, what's the problem? I was just curious if anyone else had these continuous and on-going spells. Thanks, all, Dalton Dalton H. Garis, Ph.D (no longer) Associate Professor, Commodity Price Behavior The Petroleum Institute P.O. Box 2533, Umm al Nar Abu Dhabi, United Arab Emirates Office: +971-02-607-5070/5297 Mobile: +971-50-668-5760 New York: (718) 271-2738 From: john snodgrass Date: Sat, 13 Aug 2011 12:15:37 -0700 (PDT) To: , Subject: Re: [TMIC] Fwd: MY STORY Resent-From: Resent-Date: Sat, 13 Aug 2011 12:17:11 -0700 it is documented that TM can come on in a short time or over a period of time. m
Re: [TMIC] {TMIC}sweating
Hi Cheryl,
I don't write in often but when you mentioned that you should only be affected
below the level of the lesion I thought I should respond. My TM episode hit me
5 years ago at T12/L1. However, the damage from the TM attack left me with
neuropathic problems right to the top of my scalp which was numb, an ice cold
feeling in my mouth (I called myself an icycle-breathing dragon!), cold on ears
and face, torso, arms -- but, of course, everything was and is much worse in my
lower body and legs, feet, etc.
My left side was affected more than the right with the weakness, stiffness,
cold, burning, banding, numbness, screaming skin, crawling nerves and
everything else we, who were injured by a TM attack, have to deal with on an
ongoing basis. Every exacerbation I have still increases the neuropathic
problems in both my upper and lower body to some degree.
My neurologist said something to the effect that it was like an explosion in an
electrical cord where the explosion that I felt went both down and up but left
nothing above the T12/L1 site that was visible to all the MRIs I had. The
damage and inflammation was visible at the T12/L1 area.
I do at least one hour workout at least 6 days a week in order to keep going
and I swear by exercise. My muscles finally seem to be responding better and
it helps me keep going -- although not like I could before TM.
Anyway, the short answer could have been simply 'Yes, You can be affected above
the level of a TM attack.' :-) I just thought my longer version may be more
helpful.
Best of luck to all of you.
Regards.
Louise
- Original Message -
From: rn11...@yahoo.com
To: john snodgrass
Cc: tmic-list@eskimo.com
Sent: Wednesday, November 10, 2010 11:59 AM
Subject: Re: [TMIC] {TMIC}sweating
mixed or misunderstood signals from the brain to the body functions due
to the nerve damage
John,
I understand that. But,the lesion being thoracic (chest) means I
should only be affected below that level-not anywhere above it. The numbness is
still from that level (T4) down,with a few areas of extreme sensitivity
scattered around.That's what confused them and me about the sweating.
15 yrs later and still no explanation.
cheryl
--- On Wed, 11/10/10, john snodgrass wrote:
From: john snodgrass
Subject: Re: [TMIC] {TMIC}sweating
To: "transverse myelitis"
Date: Wednesday, November 10, 2010, 10:10 AM
mixed or misunderstood signals from the brain to the body
functions due to the nerve damage.
kinda odd when i flew to fort knox KY i had to fly to PA to
catch that flight.
if i had missed the PA connection i would not have made it to
fort knox.
i think the brain works the same way. if theres a connection
problem anywhere then it will send signals or block signals trying to resolve
the problem and if it cant then it does all kinds of wierd stuff.
sometimes i wish mine would stop trying and just turn the
lights out and go to sleep but that would be a stroke ,,thats a bad thought.
if the Docs understood and could manipulate these things they
would make way more than they do.
--- On Wed, 11/10/10, rn11...@yahoo.com
wrote:
From: rn11...@yahoo.com
Subject: [TMIC] {TMIC}sweating
To: tmic-list@eskimo.com
Date: Wednesday, November 10, 2010, 9:30 AM
Hi Everyone,
I got tm at the thoracic level (T4-5),but when I
perspire on my face,one side gets red and moist,the other stays pale and dry.
No one has ever had an explanation for this.A couple of docs even suggested
that maybe I always had this and just noticed it after tm!
Cheryl in Easthampton,MA
Re: [TMIC] Age
Age 63 - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Friday, December 11, 2009 12:35 AM Subject: [TMIC] Age Hey! I have a request. I was talking to my neuro and he was curious to know the ages that my website friends were when they were hit with TM.Do you all mind sending me that info - even if you only read messages and don't usually respond? I would like to get as many ages to him as possible. I told him you all were a pretty cooperative group! Thanks guys Janice, Missouri
Re: [TMIC] Swine flu vaccine
I was hit by the episode of TM in October 2005 and my Neurologist has not allowed me to have the regular flu shot since. My TM was labelled ideopathic so, not knowing what the cause was, I believe they are erring on the side of caution in case the reaction of my immune system to the vaccine may cause another episode. I recently called my Neurologist to ask if I should take the H1N1 flu vaccine when it comes out. The secretary called back to say the doctor said no because it is too new and the possible side-effects are unknown. She doesn't want to take the chance of me ending up back in hospital. I'm in Canada where they are going to add an adjuvant to the vaccine. According to what I've read, "adjuvants are chemical boosters used to elicit an early, high and long-lasting immune response". It appears they do not feel the non-adjuvant vaccine has been working well enough in tests. I can see why my Neuro doesn't want to take the chance of upsetting my immune system too much. I gather a rush to get a vaccine out happened in the 90s because of a flu epidemic that started in the U.S. military. They were hurrying to get people vaccinated and there many became ill (died?) and some were paralyzed by the vaccine. The man in charge lost his job over this debacle. Sorry I don't have the exact figures, names, etc. I heard the man in question being interviewed a few months ago but didn't document the facts. Anyway, it comes down to the fact we each have to do what is comfortable for ourselves but I think everyone should look into the situation very carefully before deciding. Regards. Louise - Original Message - From: Regina Rummel To: tmic-list@eskimo.com Sent: Tuesday, September 01, 2009 10:30 AM Subject: [TMIC] Swine flu vaccine Good morning everybody, There was a lot of discussion in our group regarding vaccines a couple of years ago. It had been suggested that among other things, TM could be caused by the flu, a virus, whatever. Some of us were convinced of that and refused to take the vaccine. I haven't had one in four years. Others felt having checked with their doctors that we should have it and continued to get it. Question: What's going to happen now with the flu vaccine? Will some of us still be ambivalent? R
Re: [TMIC] question
Hi Kevin, The short answer is yes. For me, any kind of pressure inside the colon, e.g., being empty, having gas, constipation, etc., flares up all my neuropathic problems from that area down into the legs and feet. It's difficult to keep everything stable. Regards. Louise - Original Message - From: "Kevin Wolfthal" To: Sent: Sunday, August 09, 2009 5:16 PM Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin
Re: [TMIC] scissoring legs
Hi Grace, Oh, oh! That's why I mentioned in my e-mail that neither the hopping nor skipping were exercises but that she was using them for diagnostic purposes. When she had me try to hop, she had me stand in front of a grab bar on the wall and she stood with me. When I had to try and skip, I was near the grab bar along the wall and she was standing very close on the other side in case of a possible tumble. I really wouldn't recommend trying these exercises by yourself. As I mentioned, she didn't seem to think doing them on a regular basis would make my hopping or skipping improve. But, I figure, if the damaged nerves improve over time, then the hopping and skipping tests could be used to indicate if there was some improvement in the message response time in our spinal cords. I have recently gone through a setback with all my tm problems since the beginning of August due to a death in my family, a great deal of stress and various cold- and flu-type illnesses that cropped up during the couple of months after. I couldn't go to physiotherapy and it is amazing just how much the neuropathic pain, stiffness, spasms, etc., worsened during that time. Several times, my whole left leg has gone into a spasm that has pulled my toes down into a point and I can't feel my foot or put it flat on the floor. It was like being a ballerina on point. The first time it happened I was frightened that I was going to end up in the hospital. Even my bad knee (a problem prior to tm) flared up with excrutiating pain during the past month. I was in so much pain I couldn't exercise. I've been trying to get back on track for the past week or so and I can feel a bit of improvement already but there is still a long way to go. One thing I've learned by this situation is that, for example, if we were fit prior to tm and were exercising regularly at the gym then hurt something and had to stop for awhile, our bodies would respond fairly quickly once back at our exercise program. Conversely, in our tm situation, if we have to stop physio because of a health, emotional, physical problem, or other reason, and the tm symptoms get worse, it takes much longer to even get back to where we left off, let alone make any improvement. Sorry for rambling, but I guess I'm trying to say is that physiotherapy is a necessity in order to manage the residual effects of our tm attack. We may never get back to where any of us were pre-tm (whether we are in a wheelchair, on a walker or walking with a cane, etc.) but physiotherapy is vital just to keep us from regressing. We need all the help we can get. If you are in physio, keep it up. If you aren't, then ask your doctor to send you to a physio- (physical) therapist to see if they can create a home-program for you that you will be able to maintain over time. We really need to be our own advocates in dealing with the residual effects of the tm attack. I won't be going to the spinal cord injury clinic for long but, before I am discharged from this program, I hope the physio will set up a three-tier program that can be sustainable at home. Ideally, it will consist of several exercises to target the necessary muscle groups at a level that reflect my current abilities. The other two levels should consist of a less strenuous set of exercises targeting the same muscle groups (in case of a knee flare-up, other setback, etc., so I can continue to do something) and a higher level of the same exercises that I could do when/if I get stronger. It also helps if the exercises are written down on paper with sketches of each as it is easy (for me at least) to forget the correct way to do exercises over time. That is my two cents worth on the importance of physiotherapy but I've really found, from my recent experience, just how important some exercise will be during the rest of my life. Regards to all. Louise - Original Message ----- From: Grace M. To: Heather & Pieter Cc: Louise Croyden ; Todd Tarno ; sal r ; tm Sent: Thursday, November 08, 2007 10:17 PM Subject: Re: [TMIC] scissoring legs Hi Louise, I just tried skipping---and absolutely cannot do it. (In fact, it was almost tragic.) The hopping thing is so bizarre---I actually feel like I've hopped despite accomplishing nothing. Now the skipping was a dangerous undertaking for me and I don't think I'll try it again anytime soon. Just managing to take off, it felt like my legs weighed 1000 pounds each, and of course once I did *take off*, my skipping mechanism pooped completely out and I had to make a quick grab for the couch. Sheesh! Grace
Re: [TMIC] scissoring legs
Hi All, I don't write in very often but I noticed your message about trying to hop. The physiotherapist I am seeing had me try to hop and to skip. I couldn't do either. Have you tried skipping yet? It definitely is a strange feeling to get all psyched up to hop off the floor and the feet just stay planted there! I asked why and she said that both hopping and skipping require very quick messages between the nerves, brain and muscles and, when we have a spinal cord injury, the responses aren't fast enough. They aren't her exact words, and it was a few months ago, but that is the gist of it. I asked if practising would help but, if I remember correctly, she didn't seem to think it would. I think she was using it more as a diagnostic tool than an exercise for me to do. Regards. Louise - Original Message - From: Grace M. To: Heather & Pieter Cc: Todd Tarno ; sal r ; tm Sent: Thursday, November 08, 2007 5:14 PM Subject: Re: [TMIC] scissoring legs Heather, I'm not sure why the neuro asked me to try to hop. The visit before last, he held onto my forearms, and I to his, and he instructed me to take a *little* hop. It actually felt like I hopped---but really, nothing happened. I've been practicing here at home, but so far, have not actually done any real hopping. It is truly the oddest sensation. One's legs and feet, actually feel like they have hopped when ever they haven't. I get so frustrated!! One day, this old girl WILL hop, come heck or high water!! Grace
Re: [TMIC] hot feet
Hi, I wear Crocs in the yard and was thinking of buying a pair for slippers in the house. They are as comfortable as anything I've worn so far because they don't fit too closely to the foot. I can't stand anything enclosing my feet -- even socks -- so I've bought some diebetic socks that don't feel like they are strangling me around the ankles and they have double soles. They are called "All Day Socks" and I bought them at Sears here in Ontario, Canada. Even with those, I constantly take off my socks, walk around barefoot, then my feet can't stand the feel of the floor, carpet, etc., and I put them back on. This goes on all day. I drive myself crazy with the socks on and off all day and I am always rubbing one foot against the other. They constantly feel like cold/burning and with various levels of numbness, tightness. The one I hate the most is when I have been doing too much (like having my shower and trying to dry my hair) and my left leg becomes much more cold/burning/numb and the foot feels like a block of wood. By the time I've washed, dried, dressed and eaten my breakfast, I feel like tearing off the clothes on the lower part of my body, putting a light pair of pjs on and lying down on the bed. Sometimes I end up doing that by about noon so even my clothes are off and on all day. Basically, all I've been wearing since TM are fleece-lined pants and short-sleeved t-shirts. My wardrobe has become very limited! Regards. Louise - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; Tmic-list@eskimo.com Sent: Tuesday, June 12, 2007 1:16 AM Subject: Re: [TMIC] hot feet Hello group, Has anyone tried the Crocs? If anyone isn't familiar with these, they are vinyl (I think) clog type shoes. They are supposed to be very comfortable, lightweight, etc. I am just wondering how well they will be with us with the HOT FEET. Looking forward to hearing from somebody about these, or I'll go out and be the guinea pig and then let you know. I personally have hated shoes well before I got TM and have taken them off always once I've gotten home. Since having TM with these hotter feet, I only put them on when I'd go out. Now I have Plantar Faciatis, and must wear something on my feet at all times. I think these shoes may be worth trying if they aren't too clunky. Hugs to all, Barbara A -- See what's free at AOL.com.
Re: RE: [TMIC] ot
Hi Diane, Natalie, et. al., I walk without an aid in the house (although I just had a bad fall in the garage so maybe should be using a cane), a cane for walking short distances where I don't have to stop for long and a walker for longer distances or times when I may need to sit down. My whole body is affected even though the MRI showed the inflammation to be at the T12/L1 level. I've had a very difficult time trying to come to terms with this because everything I read or heard tends to indicate that you should not have problems above the site of the demyelination. After 20 months, I have finally come to accept that this is not always the case. I've had problems with my scalp being numb, my ears and face being cold as well as feeling like I should be blowing icicles out of my mouth. I call it numb/cold/burning/screaming skin!!! I was hit harder on the left side of my body so the parts of my body on that side are colder than on the right side. The feelings of tightness, cold, burning, numbness, etc., that I experience in my legs is also in my torso and arms but to a lesser extent. If my symptoms worsen in the lower half of my body, they will worsen correspondingly in the upper body as well. Some days I feel like I have a weird weakness in my spine that starts at the very top and literally worms its way down to the bottom. When this happens, there is a sickening weak feeling in my stomach and the rest of my insides - not a very nice feeling. The Neurologist indicated "the inflammatory response was diffuse and may have injured multiple nerves that were not visualized on MRI.symptoms are consistent with neuropathic pain." The Neuro referred me to a Physiatrist (Dr. of Physiotherapy) and I have been accepted as an outpatient at a spinal cord injury clinic in a hospital. They call it the Specialized Outpatient Rehabilitation Services. I've only had two visits: one assessment and another to put me through my paces!! The physiotherapist is very positive and says there is room for slow improvement but she did admit that dealing with the neuropathic pain is the tricky part. Anyway, I am keeping my fingers crossed. I've regressed badly since last July. My husband is very ill and our lives are upside down so all the good done by the physiotherapy up to then has gradually gone by the wayside. I'm hoping they can get me back on track. I wish all of you the very best and keep up the good fight. Regards. Louise in Ontario Canada - Original Message - From: Diane To: natalie mizenko ; Transverse Myellitis Sent: Sunday, June 10, 2007 1:46 PM Subject: Re: RE: [TMIC] ot This interesting. Wonder how many of us are affected in multiple levels ??? TM hit me at L-1/L-2 and I was paralyzed from the waist down. I learned to walk again for short distances 25-30 ft. with a cane or walker. However, I had other symptoms above the waist and my neuro has confirmed that there are minute lesions the whole length of my spine. None of these symptoms cause disability - they're just annoying. All in all, I am thankful TM was caught early before severe damage occurred. Diane in Canada - Original Message - From: natalie mizenko To: Transverse Myellitis Sent: Sunday, June 10, 2007 10:32 AM Subject: Re: RE: [TMIC] ot Sally, I was wondering what type of affect you have on your body in T6-T8? Numbness, pain? Are you able to walk. I've always wondered when folks get TM in 2 or 3 levels of the spine how it is. If you don't mind, I'm just trying to educate myself on TM. I have it from T12 down and in a w/c. Did you have Rehab in your state? I had to go from Arkansas to Texas for 7 weeks total. Thanks, Natalie "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> wrote: I live in Hawaii where it's usually in the 80's - or in cool weather, in the 70's (I know, spoiled, aren't I!) The only weather that bothers me is when it's cold - like when I went to California when it was in the 50's at night. I wore 3 pair of socks and 2 pair of sweat pants to bed. Even in Hawaii, I often wear socks around the house in the cool weather (we don't normally wear shoes in the house here, but leaves our shoes at the door). Sally (T6 - T8, 2005) Got a little couch potato? Check out fun summer activities for kids.
Re: [TMIC] Re: Who's got what?
Hi Natalie, I hope that, in my e-mail, you didn't think I was saying we would all get MS. As I mentioned, MS is only one of the underlying diseases or infections that may have caused the attack on our spinal cords in the first place -- with the resulting demylination of the myelin sheath and nerves which has left at least two thirds of us with life-changing problems. I think we all get confused when we talk about TM turning into something else when it is actually caused by something else. In my case, the inflammation (myelitis) was across both sides of the spinal cord (transverse) and they could not find a definite cause (ideopathic) so the diagnosis was Ideopathic Transverse Myelitis. They believe it happened because of a sinus infection I had just before the attack of inflammation. So far, none of the ongoing tests have shown any other reason and I haven't had a recurrence of TM to indicate something else may be going on. I apologize if my description wasn't clear enough and hope everyone will read the John's Hopkins information as it is really helpful. Regards again, Louise - Original Message - From: natalie mizenko To: Transverse Myellitis Sent: Wednesday, May 16, 2007 1:34 PM Subject: Re: [TMIC] Re: Who's got what? When I was at Baylor they first gave me an MRI which indicated the Transverse Myelitis (I had already been diagnosed in Arkansas); anyway while I was sent over to the Baylor Rehab; right before I left my pain was so severe; she said most people w/ TM don't have that degree of pain, so anyways, the dr. ordered another MRI to see if I had a MS; but it was ruled out negative. She said you do not have MS. She told me about the possible reccurence of TM which was slight, but she never told me I would later get MS. I am surprised to see so many saying it will go into that. I haven't read that anywhere but here. Anyway hope everyone pain is better today, Natalie Louise Croyden <[EMAIL PROTECTED]> wrote: Hi Everyone, I have been reading all the e-mails about TM and MS, etc., and I have also been confused about it since I was struck by TM in October 2005. According to what I've been told and have read since my TM episode, TM isn't a disease but is a condition caused by an inflammatory response to an underlying disease such as MS, Lupus, an infection As I understand it, some of us will later be diagnosed with MS but TM doesn't turn into MS. The TM episode was actually the first demylinating hit of relapsing-remitting MS but there was not enough evidence to diagnose MS at the time. That is why they continue to do tests such as Evoked Potentials and further MRI's in order to rule out or confirm the MS diagnosis. If there is evidence that we actually have MS, then they would start the proper treatment. My Opthamologist told me not to be surprised if they diagnosed me with MS sometime in the future. On the website of the John's Hopkins Transverse Myelitis Centre at http://www.hopkinsneuro.org/tm/disease_and_condition_detail.cfm?condition_id=8 they say that "Several diseases may lead to transverse myelitis, and should be investigated at the time TM presents itself". Click on Diseases & conditions on the home page for the three sections of information: Transverse Myelitis; Transverse Myelitis Care and Transverse Myelitis Associated Diseases. Under the list of underlying diseases that cause TM, they include some possible infectious diseases such as hepatitis A,B or C, Lyme disease or Mycoplasma pnuemonia. There are also separate headings for Lupus, MS and Vascular Disease. If anyone hasn't yet checked out the information from the John's Hopkins TM Center or hasn't looked at it for a long time, it has been updated with more information since I first read it in early 2006 and has answered more of my questions. I hope this helps. I just keep hoping for a minor miracle to help all of us whose lives have been cha nged so dramatically by whatever disease caused our TM and keep looking for ways to cope in the meantime. Regards to everyone, Louise
Re: [TMIC] Re: Who's got what?
Hi Everyone, I have been reading all the e-mails about TM and MS, etc., and I have also been confused about it since I was struck by TM in October 2005. According to what I've been told and have read since my TM episode, TM isn't a disease but is a condition caused by an inflammatory response to an underlying disease such as MS, Lupus, an infection As I understand it, some of us will later be diagnosed with MS but TM doesn't turn into MS. The TM episode was actually the first demylinating hit of relapsing-remitting MS but there was not enough evidence to diagnose MS at the time. That is why they continue to do tests such as Evoked Potentials and further MRI's in order to rule out or confirm the MS diagnosis. If there is evidence that we actually have MS, then they would start the proper treatment. My Opthamologist told me not to be surprised if they diagnosed me with MS sometime in the future. On the website of the John's Hopkins Transverse Myelitis Centre at http://www.hopkinsneuro.org/tm/disease_and_condition_detail.cfm?condition_id=8 they say that "Several diseases may lead to transverse myelitis, and should be investigated at the time TM presents itself". Click on Diseases & conditions on the home page for the three sections of information: Transverse Myelitis; Transverse Myelitis Care and Transverse Myelitis Associated Diseases. Under the list of underlying diseases that cause TM, they include some possible infectious diseases such as hepatitis A,B or C, Lyme disease or Mycoplasma pnuemonia. There are also separate headings for Lupus, MS and Vascular Disease. If anyone hasn't yet checked out the information from the John's Hopkins TM Center or hasn't looked at it for a long time, it has been updated with more information since I first read it in early 2006 and has answered more of my questions. I hope this helps. I just keep hoping for a minor miracle to help all of us whose lives have been changed so dramatically by whatever disease caused our TM and keep looking for ways to cope in the meantime. Regards to everyone, Louise - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Tuesday, May 15, 2007 10:22 PM Subject: Re: [TMIC] Re: Who's got what? Patti, My doctors told me that someone with TM will only have a re-occurrence if they had underlying illness such as, MS, Sarcoidosis or some other autoimmune disease. I can't imagine going back through what I went through(total paralysis from neck down). It was hard enough to survive the first time. I would just give up the second time. Naomi C-4 quad since July 2, 2005 -- See what's free at AOL.com.
Re: [TMIC] allodynia
Hi All, I was trying to find information on the neuropathic pain we are all experiencing since our TM attacks. I clump all the various problems such as cold/burning/numb/stiff/screaming skin (I think that covers most of it) under the term neuropathic pain. That is the term the Neurologist uses to describe all of it. My neuropathic pain, including spasticity, is much worse right now but I know it is because of a combination of stress, doing too much, lack of sleep, too little physiotherapy-type exercise, too much walking, too long sitting, etc., etc. I'm sure we've all experienced some of these triggers but I'm having all of them at the same time. Re: allodynia, I was reading an article at http://www.spineuniverse.com/displayarticle.php/article1614.html and am copying just a couple of sentences here. As we all know: "neuropathic pain is produced by damage to, or pathological changes in the peripheral or central nervous systems." "The hallmarks of neuropathic pain are chronic allodynia and hyperalgesia. Allodynia is defined as pain resulting from a stimulus that ordinarily does not elicit a painful response (eg. light touch). Hyperalgesia is defined as an increased sensitivity to a normally painful stimuli". It is quite a technical paper so I won't copy and paste anymore here but they do mention types of treatments that we all know about, i.e., Amitriptyline and Gabapentin (Neurontin). Regards. Louise - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Sunday, May 06, 2007 10:20 PM Subject: [TMIC] allodynia I've looked up 'allodynia', but still don't really understand it. I've never heard of it before, and now 3 of you have just mentioned it. Can you give me an example of how it works? Sally
Re: [TMIC] spasticity
Hi Alton, They did seem to cover most of the spasticity (banding) problems in the NINDS information. I could relate to quite a bit of it. I know what you mean about the knee coming up to try and hit the chin except it happens to me when lying on my side in bed. Then the top knee jerks up to my chest. It does it several times then eventually settles down until the next night. It has lessened in frequency lately so am keeping my fingers crossed. The worse part of the spasticity for me is the tone you mentioned. I have it continuously in my right buttock. Every day there is a range of pain from a tightness/stiffness with some pain to very painful -- depending on how active I am. It plays havoc on my ability to sit. I have a variety of pillows, blankets, cushions, etc., to sit on but I spend most of my day pacing or eventually lying down. Another bad one for me is the tight feeling around my ankles. It feels like a giant is doing his laundry and is wringing out his clothes! :-) Then last but not least are the muscle cramps. That is some pain when the calves and backs of the upper leg go into spasms. I still can't figure out why, when I curl my toes down on my left foot, I feel a pull/cramp at the very top of that leg. I guess it is the hamstring. My nerves seem to be sending incorrect messages to various parts of my body. When they did the evoked potentials tests, my legs jerked when they had the electrical current going from my brain to my right wrist. That was some experience. Also, I had a buzz in my right ankle when they had my left one hooked up. Does anyone have an explanation for that phenomenon? Thanks for the extra information re: spasticity, tone, etc. I just wish I could take some of the medication as it does wear me down every day. Regards. Louise - Original Message - From: Alton Ryder To: TMIC list Sent: Tuesday, February 13, 2007 2:40 PM Subject: [TMIC] spasticity One of the notes on bandiing included this statement "Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles . . ." This is one end of the spectrum of spasticity, Involuntary contraction of one or more muscles is the underlying process. These contractions may be brief, lasting only an instance, or longer, even forever. When the duration is for minutes or hours, the spasticity manifests as excess tone. I had both brief and day-long contractions. One symptom was a knee jerk where my knee would suddenly try to meet my chin , often slamming into the underside of a table. More troublesome was excess tone in my lower right leg, pulling the heel to the side. Eventually the ankle distortion put me into a wheelchair. Alton, coming up to my tenth anniversary
Re: [TMIC] Re: banding
Hi Sally, It seems like the term banding is used for the chest area. Here is a quetion and answer from the Multiple Sclerosis Society of Canada website. http://www.msanswers.ca/QuestionView.aspx?L=2&QID=258 Question: Are there any new drugs that would help severe chest banding? I have tried Baclofen and I am taking Gabapentin but as yet have no relief ever from banding. Answer: Banding is the sensation of a tight band around the chest. Although it can feel like tight muscles, it is usually due to inflammation/demyelination of a segment of the spinal cord. This results in "miss-messaging" and is interpreted as tightness when nothing is actually tight. Thus muscle relaxants don't work well, but drugs such as gabapentin , carbamazapine, or amitriptyline which alter nerve transmission can be helpful. Gabapentin must be tried up to doses of 3,600 mg per day in divided doses. If this did not work then the next choice would be amitriptyline starting at 10mg and increasing to 30-50 mg , usually at bedtime. I couldn't see the date the question and answer was posted so there may be more treatments available (if one can take them, that is). The person answering is a doctor, however, there is also a disclaimer from the MS Society of Canada at the bottom of the page re always consulting a physician for medical advice. Re: magnesium, my family doctor recommended it for the bad muscle cramps I was having in my legs. If I try to do certain exercises with my right leg, my left leg goes into horrible cramps. I must have a lot of mis-wiring! The cramping has lessened although it has not gone completely. Regards. Louise - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Monday, February 12, 2007 4:09 PM Subject: Re: [TMIC] Re: banding "Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles . . ." Thanks for your response, Louise. That's how I understood spasticity. So what I feel in my legs, ankles, feet is definitely spasticity. From a logical standpoint, it seems that extra magnesium might help relax the 'contracting', but it doesn't seem to - at least not on an immediate basis - but maybe over time. The remaining question is whether or not what we think of as banding that occurs on the trunk area is essentially the same thing - i.e. caused from continuously contracted muscles. Sally
Re: [TMIC] Re: banding
Hi All, I've had TM since October 2005 and, unfortunately, was unable to take either Gabapentin (Neurontin) or Lyrica. The side effects weren't tolerable. Here is information from the NINDS website and their explanation of spasticity. (National Institute of Neurological Disorders and Stroke) What is Spasticity? Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and may interfere with movement, speech, and manner of walking. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement. It may occur in association with spinal cord injury, multiple sclerosis, cerebral palsy, damage to the brain because of lack of oxygen, brain trauma, severe head injury, and metabolic diseases such as adrenoleukodystrophy, amyotrophic lateral sclerosis (Lou Gehrig's disease), and phenylketonuria. Symptoms may include hypertonicity (increased muscle tone), clonus (a series of rapid muscle contractions), exaggerated deep tendon reflexes, muscle spasms, scissoring (involuntary crossing of the legs), and fixed joints. The degree of spasticity varies from mild muscle stiffness to severe, painful, and uncontrollable muscle spasms. Spasticity can interfere with rehabilitation in patients with certain disorders, and often interferes with daily activities. http://www.ninds.nih.gov/disorders/spasticity/spasticity.htm When I searched for "banding" I came across this comment: "Many patients with transverse myelitis report a tight banding or girdle-like sensation around the trunk and that area may be very sensitive to touch." It was from MedicineNet.com under a section headed "Definition of Transverse Myelitis". http://www.medterms.com/script/main/art.asp?articlekey=11604 I wonder if the actual name for the condition is "Spasicity" but we describe it as a "banding" because we don't know the actual terminology? Regards. Louise - Original Message - From: Robert Pall To: Janet Dunn ; [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Monday, February 12, 2007 7:46 AM Subject: RE: [TMIC] Re: banding Dear Janet, I understand it might not be for everyone as we all have different reactions to the meds we take, just as none of us has all of the same degree of TM. That being said in 9+ years of having TM no drug has helped me with the banding in my right leg as much as Lyrica. I noticed the improvement within minutes of my first dose 1 1/2 years ago. I now take 450 mg per day and have had no ill side effects. Lastly this drug was prescribed to me by Dr. Kerr specifically for the banding, numbness and pins and needles! Rob in New Jersey -- From: Janet Dunn [mailto:[EMAIL PROTECTED] Sent: Sunday, February 11, 2007 10:54 AM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] Re: banding Hello One of my biggest symptoms is the banding. Right under my right ribs, and often down my legs. I have been told it is part of the TM. There are days though when I wonder. The banding is sometimes so intense it takes my breath away. It also is quite bad around my knee, and my foot. As an aside, I am just coming out of a week of "quality bed rest time" as I apparently picked up a virus that got my TM to fire right up. Is this the beginning of another progression or does anyone know? The bright side to the whole episode is that the doctor on call that I saw actually is experienced with TM and jumped right on the symptoms I had and placed a call to a neurologist. (We are a bit isolated) She is treating a female patient with TM and understood a lot of the other symptoms I have. So, that is 3 of us in this town now. Janet From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: February 10, 2007 7:08 PM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: [TMIC] Re: banding Randy wrote about his doctor: "He doesn't believe that anything can be done about the banding. His only comment is that it is just another symptom. " I, too, have never gotten clear answers about this. My pains are minimal, but I've occasionally experienced the tight 'banding' on the lower right section of my rib cage. However, more often, it's less severe, and just feels sore as though I'm recovering from being kicked in the ribs. It's usually worse later in the day. But even more often, I feel a 'sore' type of pain just under my right ribs - almost like a cramp, towards the front - center of my body. For a long time, this was the only pain I experienced as everything else involved was totally numb. I even noticed it for a couple of days before the TM/paralysis hit. For the better part of a year, the neuro barely paid attention to my question, saying it was just part of the
[TMIC] Transverse Myelitis Information - Johns Hopkins
You may all have seen the information on the Johns Hopkins website regarding TM but, for those who may not have read it yet, the address is http://www.hopkinsneuro.org/tm/diseases_and_conditions.cfm They have 3 sections: a general section, one on Long Term Care (rehabilitation) and another on Associated Diseases. They suggest that we discuss the possibilites for rehab, etc., with our doctors. I first saw their information last year after I had been diagnosed with TM and it looks like they may have updated some of it. They mention many of the topics that have been discussed here recently including physiotherapy, bone density testing, etc. I keep wishing someone would come up with a cure to what ails us but, in the meantime, I guess we have to educate ourselves and our doctors when necessary, in order to cope with the problems we face each day. I took a printout of some of the information to my family doctor as she admitted she has no experience with this condition. I'm new to the list and look forward to reading all the information everyone is sharing. Regards. Louise
