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Thread: Newbie with TM - Needs help or ideas

  1. #1

    Newbie with TM - Needs help or ideas

    Hi,
    I just found your forum last night. It looks like a good, active place. I have been looking for a good forum for quite a while and many are not nearly as active as this one.

    I have had TM since 1995. They have never found the lesion(s) as all MRI's have always come back normal, and I don't think they have ever MRI'd the spine. I ended up with a relapsing-remitting form of TM. I was very incapacitated the first two years, mostly due to fatigue. I did have a bad limp and weakness mostly in my left leg, but it sometimes also affected the right and very rarely the arms. Then it gradually improved and I was able to function somewhat, as long as I stayed within an envelope of what I tried to do and did not exceed that safety zone.

    In 2004 I started having relapses. I had only had one relapse between 1998 and 2004. I began having relapses about once a year. Then it increased to twice a year.

    I have been to 3 neuros. All agree it is TM. The last guy I went to for about 3 years. He said there was nothing he could do to help me and it was not progressive, so don't bother coming back. So, I haven't. I haven't been to the neuro in about 3 or 4 years now.

    Since May of this year I have been having one relapse after another, or maybe it is just one long relapse. The periods of "remission" I feel like I am fighting off a relapse all the time. I can barely get just the essentials done. I have developed new symptoms. For one thing, my cane used to always be enough. I have used a Leki cane for years, but now it does not feel at all stable. I am planning to get a quad cane, but I can't do everything at once due to limited finances.

    I got a rollater in October and I use this when I go to work (I am a substitute teacher at a school for disabled children). I have bladder accidents constantly now, and I never had any bladder issues in the past aside from it taking a long time to empty the bladder. Now I have all kinds of bladder issues. So embarrassing!

    I have also developed a stiffness, and I guess this was the first change I noticed. I just could not bend for several months before the relapse in May. I just felt stiff. When I finally relapsed, my gait was very different. I guess maybe it is spasticity? Never had this before. And now I am having terrible muscle spasms in my back that is unlike any pain I have had in my life. From my butt up to the area where I am pretty sure my injury is (I have a feeling of tightness and sometimes lately pain in this area that is on the level of my bra strap approximately). I did go and buy myself a raised toilet seat today, because it was so painful to get up and down off the toilet. It seems like it will help.

    I am a single mother with a preteen daughter who has multiple disabilities (not 100% toilet trained yet, developmentally delayed, autistic, learning disabled and blind). She said to me this weekend, "Mommy, I will be your legs now." But, she is really not able to do much for herself, much less for me. She is expressing a lot of fear what will happen to her if I "have to go into the hospital." I don't think I am going to the hospital, but I am seriously beginning to worry how I will continue to care for her and what will happen to both of us.

    I have lots of social support, but no one who is very close that I can really call on to sacrifice on my behalf. I have people who will take my daughter on an outing or even for an overnight. When it snowed last week my neighbor came over and swept my walk, but when it snowed again the snow just sat there becauses I could not remove it.

    I have not been able to do more than the essentials in my home since May. Now it has become extremely difficult for me to get to the basement to do laundry. I have a child who pees on the bed and wets her pants several times a day. I have an elderly cat who vomits on things (he has thrown up on my daughter's bed twice in the past week). I have a little dog who doesn't want to go out when it snows or rains or is just cold, and will cheat and try to do his business in the house, usually if he finds something on the floor, like my daughter leaves her coat on the floor or drops her blankets over the side of her bed, and the dog will pee on them.

    So, now I am in a position of having to go up and down basement steps (not safe and also exhausting) and am so far behind on laundry. Last week I had to change everything on my daughter's bed 3 times. I can't keep doing this! My house stinks because sometimes I am unaware of these "accidents."

    As a result, I am really embarrssed to ask one of these people who keep saying, "Let me know what I can do to help." I don't want anyone to see how bad it has become. Last week I found feces in the basement, where my dog had been not going outside but using the basement instead. It had been there so long it had dried up.

    I need help, but I don't know what to do. I haven't been able to get medical help or anything else since I got this disease.

    I am trying to get a new neuro, but even that is not going well. I also am trying to get a case manager from my health insurer, but I guess there is a wait list for that and I am waiting.

    I am going to apply for a grant to get a stacking washer-dryer installed on the main level of the house. But that will only solve one problem. When the weather gets warm, I will have yard work to overcome and that is clearly going to be impossible.

    I thought about selling my house, but how would I ever pack? If I put it on the market in this condition I would lose money.

    I need help and I don't know where to get help, or just how to manage my life in this condition.

  2. #2
    Keep going to the Neuros... I get MRIs once or twice a year regardless. But since it's getting worse now, it's not non-progressive obviously... Or it wouldn't be getting worse...

    I was diagnosed with TM for many years myself. Kept hearing the "it's not going to get any worse" speach.... "You don't have MS..." bla bla bla... Well, now suddenly it flared up real bad and whamo, it's MS.

    However, I do not see how they could diagnose you with TM without even an MRI of the spine... With TM even, I had full MRIs of the brain and spine, now that it's confirmed MS, I get them constantly...

    But I'm with you, too many doctors just don't have a clue and keep saying "yup, it's just this or that" and stop looking. That's not good enough for me. I kept going (went through over 20 neuros in my state in many cities) until I finally found a neuro who actually made sense. He also doesn't give up. Instead of looking and stopping and guessing at something without any evidense, he kept looking and looking and doing more and more tests, even outside the realm of conventional thinking (Testing for mercury, etc. for other possible causes indirectly linked...). Unless you don't have insurance, I highly recommend you continue to go and get more tests. Find a neuro you REALLY like cause even with just TM, you're going to be seeing a lot of them. Every time something changes, I go in for another MRI. Cause it might be the one that leads to something worse or just something new we can treat.

    I also used a cane for well over a decade. Then two canes just to get around. Now I am in a wheelchair. But I was stable for ~ a decade after the initial TM situation. Only recently has it stepped up and gotten much worse. But that's the problem. They are all auto-immune problems which can grow. Hopefully you don't but... They told me I was 99% sure to NOT have MS... and look at me now... Point is, they really don't know what exactly causes these problems... So even the best of them, at some point, are still guessing, unless you're situation is cure-cut and obvious. The problem with things like MS; I think it's too easily used as a catch-all for what they really don't know. It's too broad of a diagnosis.. For example, I have lesions on the spine, but nothing in the brain to signify MS. But since I've had multiple TM re-occurances and differing times and areas, that's MS. But the lady down the haul who is catatonic due to brain lesions also has MS... but it's different.. I'm sorry but that's a horrible classification/diagnosis... But that's the best medical science of today has to offer.

    I even went to the mayo clinic at $25k out of pocket (not covered) just to be told the same thing. And they're supposed to be the cutting-edge out-of-the-box thinkers... Nope... Same stuff, different people. Still, find a good Neuro you like. If you don't, keep looking. Even if you have to go to another city. They can often setup MRIs and what not remotely in your area and consult you over the phone after the initial visit for normal checkups. But find one. You'll need one and you need to like/trust the one you get. This game sucks... It sucks huge donkey-kong parts... But don't let it slide. Keep ontop of it. Get used to the MRIs. (After a while, you might even like them. It puts me to sleep... Especially now-a-days where you can even watch movies while it's happening... That's just cheating...) You're going to have an expensive future, no way around that unless someone comes up with a cure. But let's make sure it's as comfortable as possible.

    Plus, make sure you're on the right drugs. I went through a whole pharmacy until we found what worked for me. Neurontin worked well for just my TM stuff (but a ton of it). Viox (sp) also but it's off the market now which tick a bunch of people off as it worked very nicely... But a good Neuro will work with ya to figure out what's best for you.

  3. #3
    Thank you for your reply. I am not usually this negative, but I am having a rough time right now and feeling scared.

    I have wondered about the MS possibility off and on for the past 16 years. At first they said I might possibly have MS. But, about 6 years ago they changed that and said since all my MRIs are normal, it is not MS. Of course, they also said it was stable and non-progressive.

    I have had multiple MRIs of my brain over the years. Maybe 4 or 5, and one of the C-spine, because I asked the question why weren't they looking at the spine. So they did the C-spine, even though my pain is at the level of my bra strap. What they do does not make sense to me, but I am afraid to question them too much, because then they start treating you bad, like you are some crazy person.

    Big part of my problem is I cannot afford an "expensive future." I live on SSDI, a small pension and whatever I can bring in with my very part-time job as a sub. If I work a day, I bring home about $80. It helps a lot, but it is not enough to afford an "expensive future." This is scary.

    I have medicare, but the insurance they have now has a big deductible. I have a $500 deductible on my insurance and also a $500 deductible on my daughter's insurance. That is a huge chunk out of my budget. This has to come out of the grocery money. That is complicated too...since it is hard to shop and cook during a relapse. I try to cook from scratch to save money & be healthy, but when you can barely stand up and walk across the room, you just can't! At least I can't.

    I don't really understand how they expect you to live on such a small amount of money (less than $1,000 a month) and then pay this large insurance deductible out of it).

    I am still paying on a series of hearing tests my daughter had 2 years ago. It is crazy!

    There has to be some way to deal with things and survive.

    Mostly I need to find a way to function, so I can keep my job. I am afraid my illness affects my job performance, or my employer is concerned it does, and so I do not get called as often as I was called before I relapsed in December. But then again, everyday at 6:30 I breathe a sigh of relief that I did not get called to come in, because I am so sick. Still, I need the money desperately! It's horrible!

    I need some magic words or something to make this go away! Don't we wish it could happen? Sigh.

  4. #4
    SunnyDaisy, welcome to the forum. I understand your frustration and fear. My first symptom of MS was TM - the neuro did not expect me to worsen initially, but as the years dragged by it became more and more apparent that MS was the real culprit.

    Some members here have had TM since childhood and they know a great deal more about TM than I do. I might be wrong, but I have not heard of "relapsing-remitting" TM; as far as I know, frequent relapses and new events are more indicative of MS than TM. With nothing showing up on your MRIs, I'm just wondering - were they done with contrast? Also, have you had a lumbar puncture? The most reliable way to diagnose chronic neurological disorders is to rule things out, one at a time, until the likeliest culprit is found.

    As SirGCal says, even the best medical opinions in this area are just that: opinions, with greater or lesser chance of accuracy, depending on doctors' training and backgrounds. MS does not always show up on MRIs, though it usually does - the MS Society in the US reports that 5% of people with MS have normal brain MRIs (at least initially), and are diagnosed by clinical examination and medical history, often with laboratory support from lumbar puncture. Also, a lot of bloodwork needs to be done in order to rule out MS mimics (Lyme disease, gluten sensitivity, lupus, and many others). I don't know the incidence of TM being present without obvious lesions. I imagine that bloodwork would be just as necessary with TM as MS, in order to rule out other conditions.

    Since you are losing mobility, I think it would be a good idea to have MRIs with contrast of the cervical and thoracic spine. I have lost a good deal of mobility, and most of my diagnosed lesions are in the cervical cord, as SirGCal's are, and there are also a couple in the thoracic cord. Lesions in those areas might be causing your symptoms. You have already had an MRI of the cervical cord, but small active lesions are easy to overlook without contrast.

    There are no cures for chronic neurological disorders, and no treatments that work well for 100% of patients. Meds exist for the purpose of slowing the progress of relapsing-remitting MS, but they are very expensive and insurance won't pay for them without a firm MS diagnosis - not sure what the SSDI situation is regarding payment for those. And I don't know what treatments are available for people with TM.

    I am not aware of anything you can do specifically to preserve your mobility if disease is robbing you of it - exercise, a healthful diet and a good rehab plan can help. But fear and anxiety are daily companions, or at least visitors - in spite of them, a sense of humor and generally positive attitude are our best allies, and you obviously have those so you're already on higher ground. Wish I could be of more help. I am sure that members with TM will speak of their experiences.
    Last edited by Bonnette; 01-18-2011 at 04:20 PM. Reason: clarification

  5. #5
    Thank you, Bonnette. I took a bold step and used a scooter at Target this afternoon, once I was able to contort myself to the point that I could unplug the darn thing. It seems like that may have set off the spasms again, but it could have been driving my daughter back and forth to school for the second time today that did it.

    I did have contrast one time. It was just a brain MRI as far as I know, and it was normal. They were going to do a lumbar puncture one time and then decided they didn't need to. I have had lots and lots of blood tests over the years. I was treated for Lyme at the outset of my illness. I was also treated for giardia (I had recently spent a week in Boundary Waters Canoe Area with Outward Bound). The giardia treatment seemed to help somewhat, but was not 100% effective, obviously. They have tested for lupus and lots of other things over the years. The only thing that ever came back positive was Epstein-Barr. EBV was very high at the time I got sick, so this is what they say caused the TM.

    I need some practical help. Maybe you all can tell me how to do this. I have gotten to the point that getting dressed is really hard. I cannot bend over or lift my feet very far. So I have resorted to hanging onto the wall with one hand, sort of dangling my underpants down close to my feet with the other, and sticking out a foot, and then trying to swing the panties and hook my foot. Very painful and not very efficient. I am thinking there must be a better way.

    I finally resorted to putting my sweatpants on the floor and trying to stand inside the leg holes, then working them up. Again, ouch! And seemed like an easy way to make myself fall.

    Socks were totally impossible today, so I wore slip-on mocs. But, I can't do that everyday, and it is totally impractical for work.

    I need help! I live in fear of the day I cannot get pants on and have to drive my daughter to school! How could I explain that to the truant officer?! Yikes!

  6. #6
    Quote Originally Posted by SunnyDaisy View Post
    Socks were totally impossible today, so I wore slip-on mocs. But, I can't do that everyday, and it is totally impractical for work.
    Impossible as in painful or just too difficult to do alone? To me, it's extreme pain. I can't stand socks on my feet anymore. Feels like porcupines are crowding my foot. Taking socks off feels like tearing off the skin. Unfortunately, or fortunately, depending on how you look at it; you do get used to it over time. Actually your brain learns to reprogram the pain sensation.

    Anyhow, I found some slip-on mocks also that look just like deck shoes. I've worn them all around the office for over a year and no one even noticed. Plus they're super cheap. Cabela's had some... It's the only full-footed item I can stand, and luckily it looks pretty nice. Not 100% but, enough for everything but the highest-dress demands. I've even warn them to weddings with a simple suit. But otherwise I can not wear socks anymore (well, probably could now but went so long without, I'm used to this now and found shoes to work well so...).

    And I'm really good with pain... To be honest, I've had 12 stitches without any Novocaine. That type of pain just doesn't hurt me. Needles. etc. No problem. But the burning feet thing... @#$%!!! ouch... I hope you don't have the same, but if you do, I'd even be stronger about getting a proper full system scan done and a proper Neuro to set you up with a pain regiment.

  7. #7
    Quote Originally Posted by SunnyDaisy View Post
    Thank you, Bonnette. I took a bold step and used a scooter at Target this afternoon, once I was able to contort myself to the point that I could unplug the darn thing. It seems like that may have set off the spasms again, but it could have been driving my daughter back and forth to school for the second time today that did it.
    Ohh, and for the future, unplug them before you get in them. Lots easier... :-) But ya, lots of stores have them making it convenient while you don't have a chair of your own. Sometimes I leave my chair in the car and grab one of those also, depending what I'm doing and where I am. But I'm lucky in that I can walk a little bit.

    Also, if you do not yet have your permanent parking permit, it might be time to ask your doctor. Even if you don't use it all the time, when you really do need it, it's there.

  8. #8
    [QUOTE=SirGCal;1311281]Impossible as in painful or just too difficult to do alone? To me, it's extreme pain. I can't stand socks on my feet anymore. Feels like porcupines are crowding my foot. Taking socks off feels like tearing off the skin. Unfortunately, or fortunately, depending on how you look at it; you do get used to it over time. Actually your brain learns to reprogram the pain sensation.


    Wow. That's a lot of pain. This pain is different from stitches though, don't you think? As much as they hurt, they are done and they are over and you start healing. But this pain goes on and on without end. Sometimes better, sometimes worse. But with no end in sight.

    I do have parasthesias in my legs and hips, and burning pain on the bottoms of my feet. My feet feel cold all the time, so I love wearing socks.

    The impossible thing about wearing socks today was that I could not reach my toes. :-(

  9. #9
    Epstein-Barr has been implicated in the onset of MS, as well - but so have a host of other viruses. It's a confusing mess.

    As far as practical issues go, I suggest a visit with an occupational therapist. I had no idea what OTs did until a physiatrist put me in touch with one - the OT showed me (in two 60-minute sessions) how to shower, dress, cook and do everything more efficiently, including which tools to use for what function, and where to order the ones I couldn't improvise at home. There are devices for pulling on socks and pants and for buttoning shirts, and a host of others. Some of the things I'd been doing out of expedience were actually putting me at risk for a fall.

    The key is to have the OT see you actually perform tasks in your normal manner, so that he/she can make suggestions and corrections. There are also many threads on the forum about adaptive tools and ways to perform activities of daily living, but unless you know what you're specifically looking for, a search can take a long time. Better to make an appointment with an OT so that you can get the basics down. At least, that's how it worked for me.

  10. #10
    Quote Originally Posted by SirGCal View Post
    Ohh, and for the future, unplug them before you get in them. Lots easier... :-) But ya, lots of stores have them making it convenient while you don't have a chair of your own. Sometimes I leave my chair in the car and grab one of those also, depending what I'm doing and where I am. But I'm lucky in that I can walk a little bit.

    Also, if you do not yet have your permanent parking permit, it might be time to ask your doctor. Even if you don't use it all the time, when you really do need it, it's there.

    I couldn't reach the plug standing up. I am having so much trouble bending today.

    For a brief moment I considered what would happen if I just started driving, but decided it might create some kind of crisis. Just not in the mood for fireworks today. Maybe another time. ;-)

    I hear ya on the hangtag. Wish I had done that sooner. I always am in denial when I am in a remission. I think, "Hey, I don't need that thing!" And then when I relapse again I am in crisis mode and it is too hard to get it. But, life would certainly be easier if I had that.

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