Very well written and easy to understand. Is it possible to predict the type of disability one has depending on the position of the lesions? Another thing I’d like to understand is why some pwMS get pain and others don’t.
Pain is both a positive and negative phenomenon. When you get a lesion in the pain pathway and the nerves start recovering they start firing spontaneously; this typically causes sharp, shooting or neuralgic type pain. You can also damage so-called inhibitory or modulatory neuronal pathways and that changes the way you perceive sensory stimuli, i.e. non-painful stimuli are interpreted by the brain as being painful and your pain threshold may also change.
MS also affects your mood and this changes the way you perceive and manage pain. This is why anti-depressants can help with so-called central pain syndromes.
This question needs a newsletter of its own and I may do that in the future.
Also, Discomfort/pain is triggered when pwMS Ambulate Abnormally Over Time. The leg(s) discomfort is dependent on the level of MS damage inducing poor walking technique. The affected areas of pain may start in the knee(s), ankle(s), feet, and/or hips. The discomfort/pain is from "I am not Drunk, I have MS Walk". Thus, one can feel pain in one or more areas mentioned or separately, especially if only one side is affected. PwMS with Severe Spasticity or stiffness adds to the discomfort level in the legs as well. I am not on the anti-depressant train unless clinically depressed or no other drug choice for your MS discomfort. Too many unknowns, including the dreaded negative rebound issues, suicide risks, and the awful Brain Shocks from stopping SSRI's.
absolutely Fantastic. i heard you talk many years ago now at one of the newly diagnosed days at Twickenham- i believe. you spoke so much send me and in a language we could understand. Thank you so much Gavin. we need you to help us through the MS process😍
This is a great start to what will hopefully become a comprehensive resource. Presume this is your response to the (many, helpful) suggestions made to your 'rake responsibility for yourself' post? Apologies if I've got that wrong!
Thank you for this easy educational read. I now think I might have Lhermitte's sign - I had thought the problem was in the bones in my neck but MRI showed normal wear and tear and I had no answer until now. I will speak to my neurologist at my next appointment.
Lhermitte's sign happened for me in a down of about two of three months. During my initial attack that led to my diagnosis. The thing about lhermitte's sign is... At least for me, it was VERY obvious when it happened. Every single time i vent my neck i would feel the exact same tingling sensation around my right wrist. And there was absolutely no questioning it. It was not subtle at all. Very strange/interesting.
That is interesting. Mine is like a sudden thunderbolt in my spine shooting down and up into my skull. It doesn't happen all the time but is definitely connected to movement of my neck.
This type of symptom is due to a stretch sensitive demyelinated pathway. These types of symptoms usually respond to a group of drugs called sodium channel blockers, e.g. carbamazepine, oxcarbazepine, lamotrigine, phenytoin, etc.
Haven't thought of doing this. It is all about bandwidth; I don't really have the time to take this on at the moment. Unless I become a professional writer ;-)
Cathy, the Newsletters are free. I only charge for the case studies or my clinical opinions in relation to specific queries; these come from people who email me.
Very well written and easy to understand. Is it possible to predict the type of disability one has depending on the position of the lesions? Another thing I’d like to understand is why some pwMS get pain and others don’t.
Pain is both a positive and negative phenomenon. When you get a lesion in the pain pathway and the nerves start recovering they start firing spontaneously; this typically causes sharp, shooting or neuralgic type pain. You can also damage so-called inhibitory or modulatory neuronal pathways and that changes the way you perceive sensory stimuli, i.e. non-painful stimuli are interpreted by the brain as being painful and your pain threshold may also change.
MS also affects your mood and this changes the way you perceive and manage pain. This is why anti-depressants can help with so-called central pain syndromes.
This question needs a newsletter of its own and I may do that in the future.
Also, Discomfort/pain is triggered when pwMS Ambulate Abnormally Over Time. The leg(s) discomfort is dependent on the level of MS damage inducing poor walking technique. The affected areas of pain may start in the knee(s), ankle(s), feet, and/or hips. The discomfort/pain is from "I am not Drunk, I have MS Walk". Thus, one can feel pain in one or more areas mentioned or separately, especially if only one side is affected. PwMS with Severe Spasticity or stiffness adds to the discomfort level in the legs as well. I am not on the anti-depressant train unless clinically depressed or no other drug choice for your MS discomfort. Too many unknowns, including the dreaded negative rebound issues, suicide risks, and the awful Brain Shocks from stopping SSRI's.
brilliant and thank you so much. I can't wait to get to 12!
Thanks for taking the time to do this Gavin. This is very good start and sets the scene well.
I will over the next week or two I will answer all the questions posed.
I have had MS for 39 years. This article was one of the best I have read explaining it all
absolutely Fantastic. i heard you talk many years ago now at one of the newly diagnosed days at Twickenham- i believe. you spoke so much send me and in a language we could understand. Thank you so much Gavin. we need you to help us through the MS process😍
Thank you. That was very clear. Looking down the barrel of DMD is very scary. It’s great to have it explained matter of factly.
When will someone finally tell the truth about the true cause of MS - Glenard's Syndrome and the real treatment will begin?
This is a great start to what will hopefully become a comprehensive resource. Presume this is your response to the (many, helpful) suggestions made to your 'rake responsibility for yourself' post? Apologies if I've got that wrong!
Yes, it is in response to curate the clinical information in a unique site free of clutter, which is what I am working on.
Myelin production peaks at 35 years old
Thank you for this easy educational read. I now think I might have Lhermitte's sign - I had thought the problem was in the bones in my neck but MRI showed normal wear and tear and I had no answer until now. I will speak to my neurologist at my next appointment.
Lhermitte's sign happened for me in a down of about two of three months. During my initial attack that led to my diagnosis. The thing about lhermitte's sign is... At least for me, it was VERY obvious when it happened. Every single time i vent my neck i would feel the exact same tingling sensation around my right wrist. And there was absolutely no questioning it. It was not subtle at all. Very strange/interesting.
That is interesting. Mine is like a sudden thunderbolt in my spine shooting down and up into my skull. It doesn't happen all the time but is definitely connected to movement of my neck.
This type of symptom is due to a stretch sensitive demyelinated pathway. These types of symptoms usually respond to a group of drugs called sodium channel blockers, e.g. carbamazepine, oxcarbazepine, lamotrigine, phenytoin, etc.
Holy crap sorry for all my typos lol.
Prof G this is very good. Thank you.
Are you also going to be doing a Q&A newsletter related to the management of MS?
Haven't thought of doing this. It is all about bandwidth; I don't really have the time to take this on at the moment. Unless I become a professional writer ;-)
Why don't you start charging for your time? I will pay.
we can all register for this newsletter! i was not convinced until i read this article. i am now going to register and pay! thank you Gavin
Cathy, the Newsletters are free. I only charge for the case studies or my clinical opinions in relation to specific queries; these come from people who email me.
thank you
I took your advice and I now charge for case studies.