[TMIC] medications and supplements
I was interested in the claims made in Jenna's post on Glyconutrients, (http://www.vitalcarbs4life.com/ http://www.glycoscience.org/) but felt it sounded a bit like a sales pitch. I did a web search and found many sites selling the same thing with the almost the same wording as one another. It sounded a bit like a pyramid selling scheme. None seem to actually describe the product they're selling in any details, or give prices or ingredient lists etc. but all make these really huge claims. I also came upon this site, which gave a different perspective, and refuted claims about some of the studies: http://www.ratbags.com/rsoles/comment/mannatech.htm http://www.ratbags.com/rsoles/comment/mannatech060910.pdf Having said that though, Jenna, I'm not disputing your claims, and would be very interested in any treatment or supplement that actually works. Like everyone else here, I'd love to be cured or at least to find something that relieves the suffering a bit (or a lot!). I have noticed since being struck down by TM that I sometimes get huge sugar cravings and eat lollies when I do. I never used to have a sweet tooth, but now I do. I don't pig-out on them all the time, (because my legs are already wasted heaps from a yr in a wheelchair, and I don't want to have to put on extra weight for them to have to try to hold up, as I'm now managing to walk a bit now with a Canadian crutch), but the sugar-craving is something I've noticed. I wonder if that's something to do with the claims of the sites on the Glyconutrients about sugars? Maybe it's just coincidence, but I did wonder if my body may be needing more sugars or something, when I had these real cravings for something sweet. One doctor I saw while having a scan done suggested to me that fish oil supplements and glucosamine are useful in demylenating diseases, as they will help protect it in some way. I take the fish oil, as I'm a vegetarian (not any more I guess :), and think maybe I've been missing out on something in the diet. (Although no way I could bring myself to eat meat though).. But I haven't tried the glucosamine yet as it's too expensive, and I'm only barely struggling to make ends meet as it is. Has anyone tried the glucosamine? None of these things is actually a 'cure' or anything, but just maybe a maintenance thing to try to keep as well as possible, under the circumstances. I do get a bit worried at some of the quackery that targets sick people, who are desperate for cures or relief, and are probably an easy target for unscrupulous people to make money out of. But if anything would give some relief, then it would be great. I just don't want to be ripped off, because it's so hard to manage with being sick anyway. I agree with others that have written in here, with the pain. I've found the constant pain is the worst part of this. My back pain just won't go away. Some days it's not as bad as others, but it's always there. I find when I've tried to push myself to do more, I tend to pay for it over the following days with heaps more pain and fatigue. After the back pain, the legs and feet are next worst, with the pain and frozen feeling and banding. But all my joints seem so incredibly painful at times too. It's just relentless. Then there's the spasms and twitching legs; and not being able to go to the loo without heaps of laxatives every day, or to even push properly. I'm taking 200mg Tramadol morning and night for the pain, and Neurontin (which I can barely afford, so only take a little, as it's not on the PBS for neuropathic pain here, and costs almost $100 a packet at most chemists), and Baclofen for the spasticity, (which has made a huge difference for me). I still sometimes need to take Endone in the middle of the day if the pain becomes too severe. I've tried going off the Tramadol, as I don't want to become dependant on it, but the pain is just unbearable when I do. 200mg Tramadol is the biggest dose available and is long acting, and at least gives me relief. It's been over a year since I was struck down by TM, and I would have hoped that the severity of the pain in my back might have subsided by now, but it's still really bad. Well, thanks for listening. Kathryn Keen NSW Australia (where it's sweltering hot; the weather forecasters have predicted 46deg. C (about 115 deg F) heat on Sunday, and there's fires raging out of control in many areas across the country, and our town's water supply is now down to 13% due to drought, and with level 5 water restrictions likely to be implemented in March if we don't get heaps of rain in the catchment in that time).
[TMIC] Merry Christmas all
Hi everybody, Just writing to say Merry Christmas to everybody here, and wishing you all a happy, safe, peaceful, and healthy Christmas with your loved ones. It's a year ago today that I went into hospital; very scared, but at that time expected to be out again a day or so with nothing more than a bad virus. I never would have dreamed I'd not leave there till 5wks later, undiagnosed, and in a wheelchair! This has been the worst year of my life, and is a year I'll be glad to see the end of. I am so grateful to this list, and to the wonderful support network that exists here; to be quite honest, I think I may not have had the will to keep on going, without this. Being able to find information that even our doctors and specialists here don't know about, and to be able to read from others that have gone through all the same trauma and loss that this condition causes, as well as all the various symptoms and difficulties - and so it doesn't feel so alone and devastating - has helped so much! Thank you all! Take care, Best wishes, Kathryn Keen PS: Here in Australia we've had searing heat in much of the country, and dreadful drought conditions, and fires burning out of control that have taken out huge tracts of land, and destroyed wildlife habitat. In Vic there have been over 120 fires burning out of control. Where we live in NSW Central Coast, our community water supply is down to 14% capacity - a level never considered even drinkable before - and we're on level 4 water restrictions, which means no outside water use at all, as well as many other draconian restrictions. I wish you people up north could send us some of your rain - and we could send you some of our heat. :-)
[TMIC] admin query
Hello, Since changing over to my new email address, I am receiving posts, but not getting any through to the list. Could you please assist? Thank you. Kathryn Keen
[TMIC] Tizanidine
(Sorry for the previous post; I've tried to put this through earlier a couple of times... looks like it's going through now, so maybe I made an error before... anyway this is my query below).. I've read with interest the posts mentioning Tizanidine for the leg twitching at night. I have this problem off and on, but when it's occurring, it feels dreadful, and is impossible to sleep. I was given Madopar (a Parkinson's medication) for 'restless legs syndrome'; as the drs here didn't seem to realise that it was related to the TM - (even though I did say that it's only happened to me since the TM hit). Anyway; I was mentioning to my gp the Tizanidine that was mentioned on this list, and she tried looking it up, but couldn't find anything to do with it. I wonder if this is a brand name that may be specific to USA? If so, would someone please let me know what the name of the actual content of the drug is? Any relief from this awful night-time legs jumping about and twitching, and the electrical feeling down my back and legs would be much appreciated. Thanks. Kathryn Keen NSW Australia
[TMIC] Tiizanidine
Hello, I've read with interest the posts mentioning Tizanidine for the leg twitching at night. I have this problem off and on, but when it's occurring, it feels dreadful, and is impossible to sleep. I was given Madopar (a Parkinson's medication) for 'restless legs syndrome'; as the drs here didn't seem to realise that it was related to the TM - (even though I did say that it's only happened to me since the TM hit). Anyway; I was mentioning to my gp the Tizanidine that was mentioned on this list, and she tried looking it up, but couldn't find anything to do with it. I wonder if this is a brand name that may be specific to USA? If so, would someone please let me know what the name of the actual content of the drug is? Any relief from this awful night-time legs jumping about and twitching, and the electrical feeling down my back and legs would be much appreciated. Thanks. Kathryn Keen NSW Australia
Re: [TMIC] TM and recurrence
Hi Janet, I had a recurrance of TM that had me back in the hospital in May. It was 5 months after the original occurance of TM in Dec. I was sick with a virus at the time though, and whilst it did knock me about badly, and I lost a lot more movement in my legs; it still wasn't as severe as the first one. I also recovered from that more quickly; (maybe because I knew what to expect this time, and wasn't in a state of horror and panic about what had happened to my body; thinking maybe brain cancer or some terrible thing may be wrong with me). It also was the time I was thankfully given Baclofen to help with the spasticity, so maybe that had an effect on how quickly I picked up from it; maybe it was the IV steroids that helped too; because I wasn't given any of those drugs at all when the first attack struck me down. Not entirely sure I picked up from it more quickly than the first, but that's what happened; thank goodness. I was tested for MS for oligoclonal bands; but it came up negative; so it must have been a recurrance of the TM. I'm also in dread of having another attack. Both the original attack, and the subsequent one in May both occurred when I was sick with a flu-like virus, so I'm really scared of getting the flu or any virus again, and tend to try to keep away from people in the fear I may pick up something. It's silly I know, but something that does concern me. I hope you are feeling OK, and whilst I feel a bit silly in saying it, (because I also worry about that too) - try not to worry, and just concentrate on looking after yourself really well, resting when you need to, and just taking one day at a time. (That's what I need to do too; so I'm saying that to myself as well as to you). :-) All the best, and take care, Kathryn
Re: [TMIC] OT - Kathryn's post
Hi Todd, Thanks . That was actually a photo of my daughter Jacqueline. I was just the photographer. I didn't put any photos of myself on the site. :-[ Those were some of the 6 baby flying foxes I reared that year, and because I was a supervisor for these animals at that time, I also took into the creche another 8 from other wildlife carers I was supervising, as well as having some adults in care already, as well. I've also handreared possum and glider joeys, wallaby joeys; and a multitude of various native birds over 14yrs of doing it, as well as having worked in the Australian mammals division of Taronga Zoo, and a brief stint at the Australian Reptile Park as well. I was there only a year ago, but it seems like a lifetime away now. I don't know how people come to terms with this dreadful disease, and all it steals from your life. I guess it must just take time to accept, but it seems so hard. I've found friends and family also don't seem to feel comfortable around me anymore, and don't quite know what to do with me. When they visit, they now seem in a rush to go again. There's just not much to talk about anymore. Anyway; I'm sure you all have lost heaps in your lives as well. I'm just having a bit of a hard time accepting things at present. Kathryn Todd Tarno wrote: Hi Kathryn, Got to see your picture with the Grey Headed Flying Fox Juvenile bats hanging off your shirt. It looked like you had a lot of fun times and wonderful memories there. Todd, in Corpus Christi, TX
[TMIC] TMIC Re: Brain stuff or not
Hi, I don't write in here often, but I read all the posts. I really enjoy Frank's posts as they make me smile or laugh - and I knew of course, that the comments in this thread were tongue-in-cheek. :-) I had a bit of a laugh about it too, as it is s true.. I notice that Gilly also mentions bad experiences, so maybe it's worse here in Australia? But the chauvinist attitude of many of the male medical profession - esp. specialists - here towards females is really awful. It's also really hard to find anyone with any knowledge or interest in learning about TM. Most of what I learned is through this website and list, and then I go to my gp to ask for the meds or whatever, or with a print-out of info. My neuro who dx me with TM costs $90 each visit, and I can't afford that, and like Gilly, it seems a bit pointless anyway. I've also given up on all the specialists, and just see my gp when I need new scripts. It was only through this list that I learned of Baclofen and Neurontin, which has helped me so much; I would have still been on Parkinson meds if not for that. (Though the Madopar does still help occasionally, when my legs won't stop jumping about at night. It really does work quite well for that). The chauvinist attitude that I experienced - and also witnessed being done to other women as well - in 2 long hospitalizations at our local public hospital (and which I've vowed never to go back to - no matter what happens), is something I would never have believed if I had not witnessed (and experienced) it myself. My neuro that I see, only works in the private hospitals, and I don't have insurance, and he doesn't have visiting rights at the public hospital, unfortunately. In our local public hospital, they don't seem to even believe that TM exists, and they make so many errors and stuff-ups that it's really very scary to be there. One time when I was in the hospital in June, I told the staff that if I was a male with the same symptoms, that I'd be treated differently. Well; the next day, they put me in a men's ward. I was the only woman, in with 3 men. A friend of mine used to be a nurse at that hospital, and had left because of the poor standards and way they treated patients. She told me that for sure, she knew that they'd have done that to punish me. The whole experience there left me traumatized, and it didn't help at all anyway. Heaps of other things happened there too, including previously, on one occasion, a lady died next to me, and they wrapped up her body, but then left there for over 4 hours, before moving to the morgue, and left the curtain half open, with me having to lie there next to her. Maybe that wouldn't upset some, but I found it quite upsetting... There was lots more, but I won't go into it all. I'm only now just starting to recover from the experience. My specialist and gp had wanted me to go in there in May, when everything seemed to flare up again, when I had the flu, and I apparently had very 'brisk' reflexes, and had some foot response or something; they wanted me tested for MS, and put on steroids. They did that at the hospital, and the test turned out negative, but in doing that I was basically left in there to rot for 5 wks before they discharged me, and I left sicker than when I'd gone in, due to the filthy conditions, and negative atmosphere there. I've sworn now, that no matter what ever happens to me; that I will never, ever go to that hospital again. I have been referred to another specialist in Sydney, but I've been too stressed and sick to go. I just want to be left alone now. I just go to my gp for meds, and don't want to see anyone else. I've become a bit of a hermit actually. Anyway; the Baclofen has helped a lot, and I've been exercising my legs lots to try to get back as much mobility as possible, (ditched the physiotherapists too), and have made some pretty good progress lately; so at least things are looking better than they were a few months back; and I'm feeling more settled, and much prefer just looking after myself anyway. Unfortunately I live alone, which makes things hard, but have gotten a good service from a local private nursing group here, so I'm getting some help with housework and shopping, as I've been in a wheelchair mostly since last December when the TM hit. I've now progressed to forearm support frame, and have even attempted a bit of staggering about with a cane. It probably looks pretty funny, sort of like I'm very drunk or something, but there's no one to stare, or to panic about my attempts, and at least I'm managing it. I feel I've progressed much better since ditching the so-called public health services, and just working things out for myself. Thank goodness I have a great gp anyway. Anyway, sorry for rambling on, but even when I think about that experience at the hospital, I still get distressed. All I had really meant to say, is that chauvinism and prejudice do exist in the medical profession, and that women do
Re: [TMIC] Update and Questions....lol]
Re: Baclofen. Maybe it doesn't help everyone, but I've found such a huge difference in my ability to move my legs since being on the Baclofen. It's been such a great help to me, and may even enable me to walk again, as I can now move my legs enough to make the walking movements (just need to strengthen my wasted leg muscles now). I haven't walked since before Christmas last year, and being on the Baclofen for a few months now, I can't believe the difference. When I forget to take a dose or two, I can feel the difference straight away, as everything starts locking up again, and it gets so hard to move or control - so I know it is the Baclofen that's working for me. I wish they'd put me on it in the first place. I'm so glad I'm on it now, and if it helps me to be able to walk again, I will be eternally grateful for it. Kathryn Keen Alton Ryder wrote: spasms are BAD what do you guys take Baclofen is the drug of choice for spasticity. Alton
[TMIC] cortisone injections
Hi, My mum has cortisone injections in her spine for severe back pain that she suffers from. It was suggested that it may be helpful for the pain I'm having from the TM. I wonder if anyone has tried this and if they found it helpful? Would it be worth trying? Thanks. Kathryn Keen PS: Thanks Jude for the well-wishes. I hope you can get a bit of good fortune now; I can't imagine how hard it must be for you to have been in plaster all that time - on top of everything else - you sure are brave.
Re: [TMIC] OT:Permission To Feel
Hello Krissy, I felt actually the opposite with my experience. I found that when I cried and would get upset (allowing myself to feel those feelings - and understandably these feelings are valid for anyone with this awful disease, where you suddenly can't walk, and feel sick etc.). But what I found is that crying and letting myself get really upset about it all just would make me feel really ill and unable to cope. (In fact, even my crying has altered, and it comes out as this strange barking sort of sound... weird!) What I found is that if I tried to keep everything fairly calm and relaxed, try to avoid stress, and not let myself get too upset, it seems to keep me in much better health. I'm sure everyone who had this disease would have cried at times over the whole shock and upset and stress of losing one's ability to walk, and so on... have other people found that it helped them to cry? That's sure not what I found.. It just gives me an awful headache, sore throat, and go all shaky and weak and basically feeling dreadful. But being calm and trying to relax and just accept things, and trying to go forward a bit at a time, seems to work much better for me. That's just my experience, anyway... Kate PS Hope this message goes through. The last ones I've tried have bounced and can't get through... :-/
[TMIC] back pain, physiotherapy, medications
Hi, Thanks again for your replies. I've visited my dr and am now on "Avanza" for depression. I have some more questions now :-) I've had some sample packs of Neurontin from the dr and have a script, but they cost almost $100 a pack here in Australia, (only covered by PBS for epilepsy; not neuropathic pain). Someone suggested to me that Tegretol (Carbamazepine) can also be used for neuropathic pain, and it's covered by our PBS, so only costs me $4.70. I asked my dr about it, and she prescribed this for me to try, which I'll begin in a couple of weeks when the Neurontin sample pack runs out. (I did see on this list mention of Lyrica, but here it's even more costly than the Neurontin, and is impossible since I can't work at present, and can't afford it. I also have to purchase mobility equipment soon too, as the hospital sent me a letter wanting their forearm support frame and bath seat back; which they loaned me - and I won't be able to manage without.. I've already had to buy a wheelchair. It all adds up! I don't know how other people manage with all these things, but I'm finding it really hard to make ends meet, since getting sick). Anyhow; that's the reason why I am going to give the Carbamazepine a try, instead of the Neurontin or Lyrica. So I'm wondering if anyone has used it? Also; the new physiotherapist that's started coming here for twice a week, wanted me to try to go down the 8 steps to backyard again yesterday. (I'd listed that as my "goal" for this new physiotherapy they started with me last week, and I think this public health service lasts only for 3 months, so I guess they want to move things along fairly quickly). I mentioned to the physio that I'd had extremely bad pain and stiffness after the last time I tried it, and felt unwell; and felt that it had set me back a bit. The physio was wondering if that might be caused just by stiff muscles, which might just need more stretching. It doesn't feel just like sore muscles to me. I can't really describe it in words, but said I thought that perhaps it feels more inflammatory? The physiotherapist suggested maybe taking non-steroid anti inflammatory when I get the pain, so that I can keep doing it. I don't know what to say... I know it hurts a lot and makes me feel bad, but can't explain why in technical terms; or why it might not be helpful to force my body. The reason that was explained for trying to push my body, is that that the terminology used for my physical disability is called 'incomplete paraplegic' in that I have some movement, but am otherwise 'paralized', and that with this condition the physios try to push things a bit; to get the person mobile again, if at all possible; before muscle wastage gets too bad. This is why they want to keep me going with things even if I get the pain. That does sound logical to me, but now I dont' know what to do. Is there any documentation on TM - specifically on the pain aspect and physiotherapy - that I could print out to give them? (Also; is this a valid point; in that the muscle wastage will prevent me from walking if I don't overcome the pain and keep going before it gets too severe? Apparently I have quite a bit of muscle wastage on my legs already, and whilst doing all the exercises helps a bit; the physio thinks I need to keep trying to walk, in spite of the pain, if possible). I will print out the info files that are on this site, but if there is anything specifically relating to the rehabilitation and physiotherapy aspects, that would be very helpful! I don't think the medical profession here (esp. those in public health system), really knows what to do with this situation; and each different (public health) physiotherapist that gets assigned to me seems to have totally different ideas, method and approach. All have said that they've never treated anyone with TM before, and don't really know about it. I want to make the most of this limited time I have with the physiotherapists, so any relevant documentation on this aspect would be really helpful. Thanks for any advice or references. Sorry for the length of this post. I hope you are all doing well, and I'll send my thoughts and prayers to you all for your health and wellbeing. Kate :-)
[TMIC] thanks! ( back pain query)
Hi, Thanks so much for all the positive and helpful replies to my recent post. Sorry it's taken a while to reply, but I'm still doing all the physio and rehab stuff etc. and find I don't have the energy most times for much else right now. (Also I hurt my back so couldn't sit here for a while). But it really did mean a lot to hear from you all, and I appreciate it. :-) I'm seeing my dr tomorrow about getting on some antidepressants, so hopefully things may improve. I have another question if you don't mind; I've been pushing myself a bit hard the last week, and trying so hard to get mobility. I went out my backyard (down 8 steps) on crutches, (clinging on to the banister mainly), and really hurt my wrists and arms, because most of my weight was being carried by them. In the house I've been able to use a full forearm support frame, which I carry most of my weight through my upper arms, leaning on them and wheeling forward. It's OK for short time, but I get very fatigued from it, and of course, can't use my arms when using it. My left leg can't bear any weight at all, and isn't able to move much, but right leg can bear some weight for very short time, before it collapses and often goes spastic, but it's OK to propel forward in a full forearm walker for short 'walks'. However, my question is this; when I went down the yard, (and up steps again on my bottom), I found that I really hurt my back, and the pain in my back and left leg also was so severe it was really hard to cope with. I also have gotten the bad back pain if I use the forearm frame for too long. The pain really limits what I can do, because it can take days or even a week or so to recover from it, and then I'm really stiff again and have to start from scratch again. Is this a normal part of TM? Is there a way of avoiding that, or working through it? It's hard for me here, because none of the doctors (or even my specialist), or physiotherapists, know much about TM. Most don't know anything about it; so not really sure how to proceed. They're treating it in physio similar to stroke patient. The physiotherapist I'm with says she's never had anyone with this condition before. It makes it a bit hard. Is recovery and physio similar to stroke patients? Anyhow; not blaming the physiotherapist, because going down my backyard was my idea - the physio's have actually been very gentle and careful about doing stuff. But I just so badly need to get mobility again, because I have 7 aviaries in my yard, (it's a fairly large property, so is a bit of a trek down there as well). I have been a wildlife carer for 14yrs now, and over that time, have taken in quite a number of unreleasable animals, and some unwanted pet birds, that are all beautiful and very special, have become practically family to me. But I only have until June or July before I'll lose them all, if I can't get down there to tend to them; as I asked friends and family to give me that long to recover, so I wouldn't have to lose them. I made a roster, and people come and feed my backyard aviary animals every day, so they're all still well cared for. But obviously I can't expect people to continue to do this indefinitely. It's been a huge favour to even ask them to help me for 6 months! Yet the time is getting away, and I still am so far from being able to get out there, and into aviaries, to look after them all. It will break my heart to lose them, and I don't think I'd cope if that happens. I can't even be sure of getting good homes for them all; and I'd need to be sure they'd all be OK. (This is mainly why I signed myself out of hospital early (against medical advice); because I needed to be sure they were all OK). I'd started a rare fauna network just before I became ill, and we were going to be tracking and helping out the rare yellow bellied glider in this area, and also to help monitor and help with the koala atlas. (I did a koala care course in November, a month before getting TM. All of this I've lost now. I was working at Taronga Zoo last year at this time, doing very physical work. I can't believe that I'm now in a wheelchair unable to walk. On the positive side; one thing that I haven't lost though, is the network for Australian wildlife carers, which I run, and do the website for. At least I can do that whilst disabled. (The network forum and website I designed is www.ozark.wild.net.au if anyone is interested to have a look. The story about one of the ybg I cared for is under 'information' --'discussion' if you were wondering what they are). Also; am doing some crafts which help to take away the huge stress and depression. It helps a lot. Anyway; sorry again for the long blurb. (I'm waiting at present for one of my 'feeders' to come to do my birds, but he's not arrived yet; (which is probably why this is so long!) Thanks all. Take care, and all my best
[TMIC] (no subject)
[TMIC] RE:WHY DEPRESSION WITH TM
Hi, I've just recently joined this forum and have been reading the posts for a bit. I can relate to the depression thread here. I developed TM in December, was hospitalised, and am now stuck in a wheelchair, and it's affected every part of my life. My neurologist says I 'may or may not' recover 'some' mobility.I'm pretty sure I'm depressed, because I can't imagine living this way for the rest of my life, if I don't regain mobility. Some of the losses seem too hard for me to bear, and I keep thinking that everyone would be much better off if I just wasn't here anymore, because it's such a burden to everyone and at times I just don't really want to go on. Sometimes I'll be OK and coping well for a while, but it doesn't seem to take much to bring me down again. Don't get me wrong; I've been trying really hard, and have been doing all the right stuff, going to physio, doing all the exercises, hoping to get better. I guess it's still early days yet in my case; and too early to get despondent, or even to know what I may or may not regain. But I sure can relate to the feelings of depression with this awful condition. It strikes you out of the blue, and wipes out so much, and it affects every little thing in your life. It makes you go from being independent, active and capable, to being sick, and disabled, and having to be so dependent on others. Every little thing becomes so difficult. It's become so hard to negotiate my own house - a set of stairs becomes an impassable obstacle when you're on your own - I even get jammed in my hallway when trying to turn around! :-/ even little things can become difficult, like getting skinned and bruised knuckles from always banging them on things all the time while wheeling around. To me, it's not just any one thing, but the cumulative effect of all those things; and all the pain on top of it all; that is so depressing. From reading some of the resources from this site and others, I realise that I may be depressed and may see my dr about it. But I just wanted to mention that I feel it's been a cumulative thing - where every little thing has become so difficult and tiring; the huge losses; including independence, the daily frustrations with dealing with a disability, and with using mobility aids etc; and the ongoing pain; and with feeling like a burden to others. Also; for me, I've found that I also feel so embarrassed - like I don't want anyone who I used to know, to see me how I am now; and just want to hide out at home. It's a pretty hard thing to have to get your head around; much less your emotions, and also your sense of self too. Thanks for listening. Regards, Kate (Australia)
