Aa
lhermettes/ weakness pegging out washing?
Hi,
I have had the tingling in my neck before when I flex it forward, like I will get a bit of a zap or tingle down through my spine but last night every time I tilted my head forward I got tingled/zapped in my foot down into my big toe.
Is that still lhermettes? (sorry not sure how to spell it)
I am also finding when I peg out the clothes onto the line that my arms get really, really tired, just the action of lifting up the clothes out of the basket and then putting on the clothes line, this must use some strength, I don't know but I find it more difficult now, my arms fatigue? Does anyone else find this happens?
Cheers,
Udkas
I have had the tingling in my neck before when I flex it forward, like I will get a bit of a zap or tingle down through my spine but last night every time I tilted my head forward I got tingled/zapped in my foot down into my big toe.
Is that still lhermettes? (sorry not sure how to spell it)
I am also finding when I peg out the clothes onto the line that my arms get really, really tired, just the action of lifting up the clothes out of the basket and then putting on the clothes line, this must use some strength, I don't know but I find it more difficult now, my arms fatigue? Does anyone else find this happens?
Cheers,
Udkas
Appreciate this is a very old post, but how did this all progress? I'm a year into diagnosis but fighting it as I think it could be related to my silicone implants but naturally with a positive brain MRI showing 2 lesions and a LP also showing topological bands, doctors won't consider anything other than MS.. mucho frustrating! Any of you guys find any good treatments for the muscle weakness and tremors? I turn my head and a pain shoots right down my leg... seeing this post I'm thinking maybe not a trapped nerve then and classic MS....d'oh!
Interesting debate, I will see if I can answer his reasons and logic that he has given to me for my diagnosis. Which can be given if you fail to meet other criteria and all other reasons have been ruled out.
I am enjoying this learning too and I guess if I reply on the forum any other interested parties can put their two bobs worth in too.
For the record he has written and talks to my GP in the terms of Transverse Myelitis, he has told me he "believes" I have had an attack of TM. In a letter to the urologist he put that I have had what he "believes to me an attack of TM but due to the lack of evidence on MRI it is probable TM and he thinks that my TM is stable. This was 12mths ago, after a recent MRI.
Okay his reasoning for TM versus MS. He said what he finds on examination totally indicates spinal lesions. He reckons that the way I describe my symptoms and attack describe TM. TM is more likely to cause radicular pain, bladder issues etc. than MS. Apparently patients with TM have the clear sensory line, which I have on examination. All my abnormalities indicate spinal lesions. My onset was sudden and was more symettry, suggesting a longer lesion across the length of the cord.
Apparently what I describe and how I described it and what he finds on examination all leads to him believing it is spinal lesion. I think the reason why he has ruled out MS is because I have had so many brain MRIs over such a long period with them all being normal. Apparently MRI is pretty sensitive to the brain imaging if it is done on a T3 machine, but he still acknowledges this is not perfect but he said if I had remitting relapsing MS he would think by now that something would have shown up on MRI as obviously over time it would get worse.
I think he thinks i have had more than one attack of TM but it is stable and what I experience is relapses of my old symptoms. He told me that some people with TM NEVER recover, they always have symptoms that come and go and can appear worse than the original symptoms if they are over tired etc. From what I understand the symptoms over lap with those of MS. He said that the imaging for the spine even on T3 machines is far from perfect and just because it does not see them does not mean that they are not there. he said he is very confident that i have lesions on my spinal cord, he said it would be impossible for me to have such an abnormal exam without not having them there.
I was very tired, I had my daughters wedding and it has been hot, so maybe I flared things up, like a pseudo relapse, but my gut feeling is this time things had got worse, I guess even if it is MS they still can not offer me Copaxone or any other DMD as by Australian law I need to have 2 lesions on MRI and I have none.
I am grateful that I have a neurologist who does not have to rely on testing via MRI etc to make a diagnosis, he is confident enough to come to his own conclusion by listening to my history and by examining me. As so many Drs are ready to say their patients are loony if their MRI is normal or they "don't fit the box" he is obviously making an educated guess at what he thinks is wrong with me, so many people these days on rely on tests and many tests rely on the reader of them and can produce false negatives etc. T7 machines are showing lesions that are not visible on T3 so it is plausible that I may have had an attack of TM that is not prominent enough to show up. I guess if I continue to have attacks it will show, but I am not sure if my neuro is convinced that I am having new attacks of it is just old stuff re appearing, I too am uncertain.
Will keep you posted, maybe I am just insane...lol
Cheers,
Udkas
I am enjoying this learning too and I guess if I reply on the forum any other interested parties can put their two bobs worth in too.
For the record he has written and talks to my GP in the terms of Transverse Myelitis, he has told me he "believes" I have had an attack of TM. In a letter to the urologist he put that I have had what he "believes to me an attack of TM but due to the lack of evidence on MRI it is probable TM and he thinks that my TM is stable. This was 12mths ago, after a recent MRI.
Okay his reasoning for TM versus MS. He said what he finds on examination totally indicates spinal lesions. He reckons that the way I describe my symptoms and attack describe TM. TM is more likely to cause radicular pain, bladder issues etc. than MS. Apparently patients with TM have the clear sensory line, which I have on examination. All my abnormalities indicate spinal lesions. My onset was sudden and was more symettry, suggesting a longer lesion across the length of the cord.
Apparently what I describe and how I described it and what he finds on examination all leads to him believing it is spinal lesion. I think the reason why he has ruled out MS is because I have had so many brain MRIs over such a long period with them all being normal. Apparently MRI is pretty sensitive to the brain imaging if it is done on a T3 machine, but he still acknowledges this is not perfect but he said if I had remitting relapsing MS he would think by now that something would have shown up on MRI as obviously over time it would get worse.
I think he thinks i have had more than one attack of TM but it is stable and what I experience is relapses of my old symptoms. He told me that some people with TM NEVER recover, they always have symptoms that come and go and can appear worse than the original symptoms if they are over tired etc. From what I understand the symptoms over lap with those of MS. He said that the imaging for the spine even on T3 machines is far from perfect and just because it does not see them does not mean that they are not there. he said he is very confident that i have lesions on my spinal cord, he said it would be impossible for me to have such an abnormal exam without not having them there.
I was very tired, I had my daughters wedding and it has been hot, so maybe I flared things up, like a pseudo relapse, but my gut feeling is this time things had got worse, I guess even if it is MS they still can not offer me Copaxone or any other DMD as by Australian law I need to have 2 lesions on MRI and I have none.
I am grateful that I have a neurologist who does not have to rely on testing via MRI etc to make a diagnosis, he is confident enough to come to his own conclusion by listening to my history and by examining me. As so many Drs are ready to say their patients are loony if their MRI is normal or they "don't fit the box" he is obviously making an educated guess at what he thinks is wrong with me, so many people these days on rely on tests and many tests rely on the reader of them and can produce false negatives etc. T7 machines are showing lesions that are not visible on T3 so it is plausible that I may have had an attack of TM that is not prominent enough to show up. I guess if I continue to have attacks it will show, but I am not sure if my neuro is convinced that I am having new attacks of it is just old stuff re appearing, I too am uncertain.
Will keep you posted, maybe I am just insane...lol
Cheers,
Udkas
I agree with you....if the neuro can give a clinical dx of TM, why can't he give a clinical dx of MS? and Yes, with the relapses and symptoms, I also agree that MS seems more likely than TM.
Too right! Okay, but what I said is still true - there's no specific reason to suspect TM over MS, since there's no evidence on the MRI.
Even if this is residual neurological damage from TM, there should still be a lesion there, right? And if the lesion's healed up, then Udkas's symptoms would have resolved.
Even if this is residual neurological damage from TM, there should still be a lesion there, right? And if the lesion's healed up, then Udkas's symptoms would have resolved.
I believe that she said she has had multiple MRI's on a 3T machine that have come back normal. See the last post....three up, from Udkas.
Just sent this as a note, but I'll post this to the thread, too...
I've always heard that people with TM have neurological damage from the single lesion, but gradually over time, they recover much of their function.
I also saw that people with TM sometimes have flareups of their condition, but it's very rare. If you've got new symptoms, it makes it less likely to be TM, and more like some other neurological condition.
So obviously I don't want to point you in a direction that's wrong! These guys go to college to learn how to do this - I'm just looking at what I read online, and making educated guesses. But without a 3T MRI of your spine, you're not going to get the complete picture of what's going on. If your neuro is getting a low-resolution MRI of your spine, and then saying that you don't have MS based on the results... well, it sounds like he's wasting your time.
I don't know if it's available in your area, but there's something called 'optical coherence tomography' that they're starting to use. They can check for atrophy by looking at the optic nerve at the back of the eye. This atrophy has a strong correlation with MS, and it's more accurate than the MRI.
I have lesions in the spine. My right leg was very weak from the start of my symptoms, but recently both legs have become weak and numb at the knees. I have problems with myoclonus of the legs and spine.
I had been with my neurologist (the one that diagnosed me) since my diagnosis in 2007. He scheduled me for a .7T of my cervical and thoracic spine when I started talking about my leg symptoms, then when it didn't show anything, said that I was just fine, even when I was having symptoms that pointed to lesions in the spine. (Clonus, spasticity, weak legs) This was 2008. Since there was nothing on the MRI, he assumed there was nothing going on. Fast forward to 2010 - I had to do my own research and bring him the address and contact information of a clinic in Dallas that had a 3T machine. The new 3T MRI showed several lesions in the upper and lower cord.
So your neurologist is making an assumption that you have one lesion that goes across the cord, and calling it transverse myelitis, even though he hasn't seen anything in your cord at all. That's what makes my eyebrows go up! He may be absolutely right, but if what you're telling me is true, he's making a diagnosis without enough information.
My neurologist told me that there's a group of people with MS who don't have a lot of lesions in their CNS. I might be one of those people - lesions in the brain and spine, but more symptoms than can reasonably be attributed to the existing lesions. You might be as well.
I've always heard that people with TM have neurological damage from the single lesion, but gradually over time, they recover much of their function.
I also saw that people with TM sometimes have flareups of their condition, but it's very rare. If you've got new symptoms, it makes it less likely to be TM, and more like some other neurological condition.
So obviously I don't want to point you in a direction that's wrong! These guys go to college to learn how to do this - I'm just looking at what I read online, and making educated guesses. But without a 3T MRI of your spine, you're not going to get the complete picture of what's going on. If your neuro is getting a low-resolution MRI of your spine, and then saying that you don't have MS based on the results... well, it sounds like he's wasting your time.
I don't know if it's available in your area, but there's something called 'optical coherence tomography' that they're starting to use. They can check for atrophy by looking at the optic nerve at the back of the eye. This atrophy has a strong correlation with MS, and it's more accurate than the MRI.
I have lesions in the spine. My right leg was very weak from the start of my symptoms, but recently both legs have become weak and numb at the knees. I have problems with myoclonus of the legs and spine.
I had been with my neurologist (the one that diagnosed me) since my diagnosis in 2007. He scheduled me for a .7T of my cervical and thoracic spine when I started talking about my leg symptoms, then when it didn't show anything, said that I was just fine, even when I was having symptoms that pointed to lesions in the spine. (Clonus, spasticity, weak legs) This was 2008. Since there was nothing on the MRI, he assumed there was nothing going on. Fast forward to 2010 - I had to do my own research and bring him the address and contact information of a clinic in Dallas that had a 3T machine. The new 3T MRI showed several lesions in the upper and lower cord.
So your neurologist is making an assumption that you have one lesion that goes across the cord, and calling it transverse myelitis, even though he hasn't seen anything in your cord at all. That's what makes my eyebrows go up! He may be absolutely right, but if what you're telling me is true, he's making a diagnosis without enough information.
My neurologist told me that there's a group of people with MS who don't have a lot of lesions in their CNS. I might be one of those people - lesions in the brain and spine, but more symptoms than can reasonably be attributed to the existing lesions. You might be as well.
I would think time for a repeat Brain and spinal cord MRI..... on a very good machine with 3mm slices!
Sorry you are going through so much....sounds very frustrating!
Sorry you are going through so much....sounds very frustrating!
My brain MRI is normal, not even anything to question, totally normal, my spinal MRI is normal too, I have had MRI with and without Gadolinium on a T3 machine on repeated occasions and nothing shows, I have had two lumbar punctures and nothing shows.
I have had my cervical and my thoracic spine MRI on T3 machine 3 times in the last few years, I think it would be coming up to over 12mths since I last had one done.
My diagnosis was made on the clinical evidence, with TM apparently you have like a sensory line from just below the lesion and my symptoms and apparently how I describe them all pointed clearly to TM (so i am told) My daughters friend had an attack of TM and their lesions showed up on MRI but have now disappeared off subsequent MRI, their symptoms are similar to mine, so when I had my attack the first neurologist didn't even image my spinal cord until much later and the imaging technique was not so great then, my neuro insists that just because you can't see them does not mean that the lesions are not there. He has made his diagnosis by ruling out other things (eliminating) and by listening to my symptoms and how they occur etc. and what he finds on physical examination. My physical exam is abnormal, my toe goes the wrong way (babinskis), I have clonus, I can't do the tandem walk thing, I have hyper reflexia, weakness in both arms and legs, when I go to extend my arm out i get a tremor too, I am on Vesicare for my bladder, gabapentin for my nerve pain etc., I have been assessed by a urologist as well and I have neurogenic bladder too..lol
My symptoms do remind me too of MS, but I would think by now it should have shown up, but I am confused..lol
Udkas
I have had my cervical and my thoracic spine MRI on T3 machine 3 times in the last few years, I think it would be coming up to over 12mths since I last had one done.
My diagnosis was made on the clinical evidence, with TM apparently you have like a sensory line from just below the lesion and my symptoms and apparently how I describe them all pointed clearly to TM (so i am told) My daughters friend had an attack of TM and their lesions showed up on MRI but have now disappeared off subsequent MRI, their symptoms are similar to mine, so when I had my attack the first neurologist didn't even image my spinal cord until much later and the imaging technique was not so great then, my neuro insists that just because you can't see them does not mean that the lesions are not there. He has made his diagnosis by ruling out other things (eliminating) and by listening to my symptoms and how they occur etc. and what he finds on physical examination. My physical exam is abnormal, my toe goes the wrong way (babinskis), I have clonus, I can't do the tandem walk thing, I have hyper reflexia, weakness in both arms and legs, when I go to extend my arm out i get a tremor too, I am on Vesicare for my bladder, gabapentin for my nerve pain etc., I have been assessed by a urologist as well and I have neurogenic bladder too..lol
My symptoms do remind me too of MS, but I would think by now it should have shown up, but I am confused..lol
Udkas
That's kinda what I was thinking... Udkas, you have two lesions in your spine, right? One in the thoracic and one in the cervical. You also have relapses, which makes transverse myelitis much less likely. When people start having relapses, the doctor starts considering other possible diagnoses. A relapse with TM is very rare.
http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm
http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm
Do you have lesions that show up on your Cervical MRI?
If not, how can your doctor diagnosis TM?
and if you do....it could be MS. There are people who have MS and only have lesions in their spine.
If not, how can your doctor diagnosis TM?
and if you do....it could be MS. There are people who have MS and only have lesions in their spine.
I guess he can't treat me for MS if there is no evidence of MS. Because my symptoms appeared in both legs initially and went upwards it suggests spinal cord I guess, the neuro said if my brain MRI was abnormal he would start treatment but it's normal and has stayed that way, this is why he does not think it's MS. Also with MS symptoms usually start in one limb at a time not both legs (well at least that is my understanding)
My post on TM was to try and find out if anyone else with TM gets the relapses I keep getting, they scare me, and I don't get it. I get frustrated that my MRI is normal as I feel far from normal, but if I am not progressing and only had one or two attacks of TM then that would or could explain the lack of evidence, my neuro still maintains that brain imaging is pretty accurate over a period of time these days, so in other words if I had MS it should show up by now. Talk about being confused!!! At least my neuro does not think I am crazy, neither does my GP, or neither did the other neuro.
I don't want to change neuro's he can't treat me for MS as I don't meet the criteria.
My post on TM was to try and find out if anyone else with TM gets the relapses I keep getting, they scare me, and I don't get it. I get frustrated that my MRI is normal as I feel far from normal, but if I am not progressing and only had one or two attacks of TM then that would or could explain the lack of evidence, my neuro still maintains that brain imaging is pretty accurate over a period of time these days, so in other words if I had MS it should show up by now. Talk about being confused!!! At least my neuro does not think I am crazy, neither does my GP, or neither did the other neuro.
I don't want to change neuro's he can't treat me for MS as I don't meet the criteria.
I did read the posts on TM, which made me think that perhaps your neuro was crazy! But he's treating you for your symptoms at least, if not for MS.
This neuro was my second opinion neurologist, my first one diagnosed me with MS, then took the diagnosis away when nothing progressed.
My neurologist at the moment does not think I am progressing (not sure about this lot of stuff), he reckons that my symptoms is just the way that TM behaves, you have relapses and it can affect different areas but it does not neccesarily mean it is getting worse, so I am guessing it is still "one of attack", although I am certain I am getting worse, at least this time round I am sure I have less strength in my arms, but I have not seen him, only talked to the nurse. The nurse thought I was having another attack, but when she talked to him he said that TM can behave like that, he referred to it as rumbling TM. (lol), rumbling my arse! lol.
He is considered one of the leading experts on MS in the world!! And I do trust him.
TM can reoccur, not very common and usually when it does it is either changing to MS or there is another underlying condition that is making reoccur, ie: Sjordens, Lupus etc. so it becomes secondary to that.
The worst thing is with TM they can't really treat it, they only treat the symptoms, my neuro is monitoring me for MS, I have had repeated MRIs and LPs, nerve conduction tests etc. etc. but they are all normal. He is basing his diagnosis on what I tell him and what he finds on physical examination, there are no lesions on my MRI, but he just reckons they are there because of what he can see with my body physically, like the clonus, the hyper reflexia, the clear sensory line etc. everything I describe is classic TM, just after talking to others on this forum with TM I realise how my banding and feeling like I was having a heartattack match the TM things.
Apparently for some people their TM symptoms continue to come and go thru out their life, and obviously I am one of them as I never fully recovered, but apparently it can cause new stuff to happen because of the shorting out in the spinal cord because the lesions go right across. I do have sus area on MRI in my cervical... what more can he do? I just feel like every time i have a flare i wonder if it is getting worse, this time I had my daughters wedding and got myself very tired, but the weakness in my arms was very scary.
SOrry Jen, waffling on, this doctor is a MS Specialist but nervous system diseases and research is his interest, the other neuro told me it was neurological but said he doubted if it was MS, but left it at that.. I went to another Dr many years ago too and she said similar to this neuro, so I don't know anymore, I think it is TM, but I am not sure if it is reoccuring but yes it can reoccur and sometimes for no reason.
Sorry for the waffle.
Did you read the posts on Transverse Myelitis?
That might give you more insight.
My neurologist at the moment does not think I am progressing (not sure about this lot of stuff), he reckons that my symptoms is just the way that TM behaves, you have relapses and it can affect different areas but it does not neccesarily mean it is getting worse, so I am guessing it is still "one of attack", although I am certain I am getting worse, at least this time round I am sure I have less strength in my arms, but I have not seen him, only talked to the nurse. The nurse thought I was having another attack, but when she talked to him he said that TM can behave like that, he referred to it as rumbling TM. (lol), rumbling my arse! lol.
He is considered one of the leading experts on MS in the world!! And I do trust him.
TM can reoccur, not very common and usually when it does it is either changing to MS or there is another underlying condition that is making reoccur, ie: Sjordens, Lupus etc. so it becomes secondary to that.
The worst thing is with TM they can't really treat it, they only treat the symptoms, my neuro is monitoring me for MS, I have had repeated MRIs and LPs, nerve conduction tests etc. etc. but they are all normal. He is basing his diagnosis on what I tell him and what he finds on physical examination, there are no lesions on my MRI, but he just reckons they are there because of what he can see with my body physically, like the clonus, the hyper reflexia, the clear sensory line etc. everything I describe is classic TM, just after talking to others on this forum with TM I realise how my banding and feeling like I was having a heartattack match the TM things.
Apparently for some people their TM symptoms continue to come and go thru out their life, and obviously I am one of them as I never fully recovered, but apparently it can cause new stuff to happen because of the shorting out in the spinal cord because the lesions go right across. I do have sus area on MRI in my cervical... what more can he do? I just feel like every time i have a flare i wonder if it is getting worse, this time I had my daughters wedding and got myself very tired, but the weakness in my arms was very scary.
SOrry Jen, waffling on, this doctor is a MS Specialist but nervous system diseases and research is his interest, the other neuro told me it was neurological but said he doubted if it was MS, but left it at that.. I went to another Dr many years ago too and she said similar to this neuro, so I don't know anymore, I think it is TM, but I am not sure if it is reoccuring but yes it can reoccur and sometimes for no reason.
Sorry for the waffle.
Did you read the posts on Transverse Myelitis?
That might give you more insight.
I still think you need a new neurologist. If you have lesions on your spine - more than one - then TM doesn't seem like a logical diagnosis. And you keep having relapses, which as far as I know, doesn't happen with TM. TM is a one-off - you get the lesion, heal up from it, then it's over.
If you can, seek a second opinion (if you haven't already!)
If you can, seek a second opinion (if you haven't already!)
Thanks, for your reply, Jen if you read the rather long thread on Transverse Myelitis it will explain what has been happening with my arms.
And yes, my neurologist says I have a lesion on my cervical and on my thoracic, but my MRI is normal! He says it doesn't matter, but I feel like I am in another flare, hence why I posted about the TM again.
My arms have had bouts of weakness where I have not even had strength enough to hold a cup, it terrifies me.
At least I know I am not alone and in that case i think the foot thing must be lhermetties
Thanks Guys,
Udkas.
And yes, my neurologist says I have a lesion on my cervical and on my thoracic, but my MRI is normal! He says it doesn't matter, but I feel like I am in another flare, hence why I posted about the TM again.
My arms have had bouts of weakness where I have not even had strength enough to hold a cup, it terrifies me.
At least I know I am not alone and in that case i think the foot thing must be lhermetties
Thanks Guys,
Udkas.
Hi. As far as the arm weakness - I get that - things like holding my hair dryer to dry my hair - my arms get tired very fast. Sometimes even carrying my purse, or pushing the shopping cart is too much.
Can it be considered l'hermitte's if it only happens in the morning after getting out of bed? I ask because this happens every morning to me .
I definitely find some repetitive tasks exhausting. Sometimes I'll be cooking and I'll have to break something up in the pan - I have to hand it off to hubby, because my arm just gets exhausted, and my hand starts cramping up and can't hold the spatula. I hear that resting frequently is the way to deal with that. Do a little bit, take a break, do a little more, take another break. Unfortunately I can't do that when I'm cooking!
I think L'Hermitte's is any abnormal sensation caused when you flex your neck. So definitely that would still qualify as L'Hermitte's. Have they found a lesion in your neck?
I've started having buzzing sensations in my upper back, between my shoulders, and it only happens when I bend my neck up. I don't know if it's because the lesions in my upper back are being activated, or if I have a lesion in my neck.
I think L'Hermitte's is any abnormal sensation caused when you flex your neck. So definitely that would still qualify as L'Hermitte's. Have they found a lesion in your neck?
I've started having buzzing sensations in my upper back, between my shoulders, and it only happens when I bend my neck up. I don't know if it's because the lesions in my upper back are being activated, or if I have a lesion in my neck.
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