Wednesday 14 March 2012
remission?
slept well despite it all. Woken with some sensation returning to left side of face. Feel like Im teetering right on the balance point of going to get better quickly or will get worse. With drugs on board helping the body fight back think its heading where i need it.
steroids and MS
OK. So I have three types of pain. MS, med side effects and injury pain.
I use 2 drugs for the MS pain and it isnt taking care of the neuralgia (think sharp pain that feels like tooth abscess) or the burning feet or hard swallowing. reluctantly started steroid use. Now I risk mania with steroid use with a whump after finished it.
I have been taking 4 hourly panadol and neurofen plus for the shoulder pain where I landed in Mondays faint and the edge si still there.
I am having hot flashes as a side effect of the 2 MS meds, requiring me to be horizontal and ice pack my body.
So... its physio referral for shoulder and back around the traps for MS pain management and med side effects.
No longer despondent. Angry. Tears will follow soon.
tramadol would be great. I agreed to go in it end 2008 when my osteoarthritis leg locked up and needed a knee replacement. I was under the mistaken belief this would be a 4 week wait and wouldnt be longer need for use. ACC decided to argue whether it was accident related and re litigated its 1984 and 1999 decision it was, so by time I got op, did post surgery and recoverd I was on tramadol for 7 months. Withdrawal was a s&&t. Yeah, have introduced caffeine back to my diet and need to keep using it as Im sensitive to not getting it on time. My body is so sensitive, but now I know I have MS (probable ) I understand I have an autoimmune disease and the pain wiring also mis fires. if the gabapentiin 3 mnt trial hadn't started to work in Dec the GP was looking at tramadol. I can telol you thaqt temezpama or imovane do not induce sleep in me that would have once put me out for 12 hours on one alone. 3 hours ago ·
Havin chosen to work in the A and field for a career, I chose abstinence from cannibas 21 years ago. If it was legal or aviailable on Prescription then I would have another option to consider.
4 hours later Steroids. First day of high dose. do that for four days then reduce by one tablet every five days until finished. That takes me till 11 April. Within four hours of taking first dose... there is sensation like flicking going into my toes and fingers indicating return of feeling, the pin pricks on the eyes have gone and I have sensation. Tingling in tongue indicating return of sensation and taste. I must have had lots of numb bits in the body around the bits burning and spasming.. I can taste food again that is not tomato based (pasta and meat dishes), heavily flavoured berry drink, sweet for the taste and custard for the texture. Just like other times Ive taken steroids... but start working again. The burning feet and neuralgia is there bnut in the background.... releasing... We did it. we stopped it before the cant stnad smell of food, stabbing and the pins and needels turning from itchy into tattoo gun like sensations arrived. WOOOHHHHHOOOOOOOOOO. (mania from ahving pain releif and steroid hight I think)
tramadol would be great. I agreed to go in it end 2008 when my osteoarthritis leg locked up and needed a knee replacement. I was under the mistaken belief this would be a 4 week wait and wouldnt be longer need for use. ACC decided to argue whether it was accident related and re litigated its 1984 and 1999 decision it was, so by time I got op, did post surgery and recoverd I was on tramadol for 7 months. Withdrawal was a s&&t. Yeah, have introduced caffeine back to my diet and need to keep using it as Im sensitive to not getting it on time. My body is so sensitive, but now I know I have MS (probable ) I understand I have an autoimmune disease and the pain wiring also mis fires. if the gabapentiin 3 mnt trial hadn't started to work in Dec the GP was looking at tramadol. I can telol you thaqt temezpama or imovane do not induce sleep in me that would have once put me out for 12 hours on one alone. 3 hours ago ·
Havin chosen to work in the A and field for a career, I chose abstinence from cannibas 21 years ago. If it was legal or aviailable on Prescription then I would have another option to consider.
4 hours later Steroids. First day of high dose. do that for four days then reduce by one tablet every five days until finished. That takes me till 11 April. Within four hours of taking first dose... there is sensation like flicking going into my toes and fingers indicating return of feeling, the pin pricks on the eyes have gone and I have sensation. Tingling in tongue indicating return of sensation and taste. I must have had lots of numb bits in the body around the bits burning and spasming.. I can taste food again that is not tomato based (pasta and meat dishes), heavily flavoured berry drink, sweet for the taste and custard for the texture. Just like other times Ive taken steroids... but start working again. The burning feet and neuralgia is there bnut in the background.... releasing... We did it. we stopped it before the cant stnad smell of food, stabbing and the pins and needels turning from itchy into tattoo gun like sensations arrived. WOOOHHHHHOOOOOOOOOO. (mania from ahving pain releif and steroid hight I think)
Tuesday 13 March 2012
Relapse after 2 months remission following 10 month relapse
Monday evening
despondent
Tuesday morning
really despondent
Tuesday evening
less despondent. rested in the main today. More philosophical about this MS relapse. Spotted it v early this time and can manage it. Made some decisions about my music commitments which needed to happen. And secured some contract research work... which involves me begin horizontal and searching and writing as first phase (I love my big tum, its such a good laptop table when horizontal), and second phase involves me talking to people in my own community. So feeling v pleased. I am working for the Salvation Army. hows that for delicious coming full circle from leaving the Salvation Army in 1985 because of homosexual law reform politics and now working for them as an out person. Im smiling. And its a happy, successful working relationship using my academic and people skills. Maybe the calling I believe I had at 14 has just come to fruition. I like to see the synchronicity in that. xA
Body in a battle with itself. I get a wave sensation through my face and head which traditionally tells me my body is regenerating nerve endings and remission is near or its only been an exacerbation and its nearly over... but then my swallowing is worse (I call it chicken bone affect - like something lodged), my face is numb on left side while the right side feels like a tooth abscess ( it isnt as I have no teeth there so its neuralgia), muscles tics, burning feet, and slight dizziness with nausea, (and add bruising to knee, wrist, leg shoulder from faint and fall) and hot flashes from reintroduced meds. I cant believe Im doing another round of this folks.!!!!!
friends post
how do you get checked.diagnosed w MS
My response
spinal tap to check for missing bits, and an MRI of brain/spine to see if there is scarring ( sclerosis means scarring) and missing myelin on the nerve sheaths. also by symptoms. generally one part of the anatomical system is affected depending on how many scars and what part of the central nervous system they are on (brain and spine)... e.g balance/co-ordination centre, pins and needles, secondary migraines, optic nerve, the glossal pharyngeal nerve ( swallowing). My one and only small lesion sits smack in the middle of the brain stem so when it flares it can go across any of the nerve systems. Im told MS is unusual in that it presents differently in different people and mine is unusual within that as when it flares it can go across many systems.
friends post
Sounds horrible :((
My response
(friends post)
May be not so ironic. Stress affects us physically. It is a putdown to say its 'all in your head', but actually so much of it is true, they are finding that more and more with recent research. We need to make more connections and not trivialise the head stuff.
My response
Yes, this is a theory I have been following. We know that the lesion sits on the same neural pathway as those who suffer with post traumatic stress disorder (which I also have). The doctors are calling this MS for want of a better term (so its probable MS because of an unusual presentation of an unusual disorder) but I cant help thinking that the lesion being where it is is the result of long term stress becoming a chronic physical condition. I have seen 1 research reports considering the correlation between DID (dissociation identity disorder which is created through extreme and repetitive events causing complex post traumatic stress disorder) and MS lesions. No tis not ironical but to label it as such helps me manage some times.!
despondent
Tuesday morning
really despondent
Tuesday evening
less despondent. rested in the main today. More philosophical about this MS relapse. Spotted it v early this time and can manage it. Made some decisions about my music commitments which needed to happen. And secured some contract research work... which involves me begin horizontal and searching and writing as first phase (I love my big tum, its such a good laptop table when horizontal), and second phase involves me talking to people in my own community. So feeling v pleased. I am working for the Salvation Army. hows that for delicious coming full circle from leaving the Salvation Army in 1985 because of homosexual law reform politics and now working for them as an out person. Im smiling. And its a happy, successful working relationship using my academic and people skills. Maybe the calling I believe I had at 14 has just come to fruition. I like to see the synchronicity in that. xA
Body in a battle with itself. I get a wave sensation through my face and head which traditionally tells me my body is regenerating nerve endings and remission is near or its only been an exacerbation and its nearly over... but then my swallowing is worse (I call it chicken bone affect - like something lodged), my face is numb on left side while the right side feels like a tooth abscess ( it isnt as I have no teeth there so its neuralgia), muscles tics, burning feet, and slight dizziness with nausea, (and add bruising to knee, wrist, leg shoulder from faint and fall) and hot flashes from reintroduced meds. I cant believe Im doing another round of this folks.!!!!!
friends post
how do you get checked.diagnosed w MS
My response
spinal tap to check for missing bits, and an MRI of brain/spine to see if there is scarring ( sclerosis means scarring) and missing myelin on the nerve sheaths. also by symptoms. generally one part of the anatomical system is affected depending on how many scars and what part of the central nervous system they are on (brain and spine)... e.g balance/co-ordination centre, pins and needles, secondary migraines, optic nerve, the glossal pharyngeal nerve ( swallowing). My one and only small lesion sits smack in the middle of the brain stem so when it flares it can go across any of the nerve systems. Im told MS is unusual in that it presents differently in different people and mine is unusual within that as when it flares it can go across many systems.
friends post
Sounds horrible :((
My response
It is horrible. but just been thinking that the first time I had the cluster of everything at once was 1996 and there was no MRI then so the sleeplessness led to psychosis and only the mH stuff was addressed. We didn't know there was a physical cause until 2003 when that cluster of symptoms appeared as those I had had a stroke or there was a tumor pressing on my motor coordination part of the brain. We found a definite physical reason. Now I dont feel crazy ( evenr though I probably am anyway)< I know what it is, I know how to respnd to it. The hard bit is when i get a new random symptom as that means is flaring across a new pathway. Its been goo dto look bakc over my life and understand that I ahve had sungular various symptoms for about 26 years. The cluster in 96 and then 2003 helped us diagnose and that means I can manage it. it is horriby ironical as an abuse survivor I struggle with random external events and surprises that I have to manage an unpredicatble disease that is random when it appears and random in what part of me it will affect.
(friends post)
May be not so ironic. Stress affects us physically. It is a putdown to say its 'all in your head', but actually so much of it is true, they are finding that more and more with recent research. We need to make more connections and not trivialise the head stuff.
My response
Yes, this is a theory I have been following. We know that the lesion sits on the same neural pathway as those who suffer with post traumatic stress disorder (which I also have). The doctors are calling this MS for want of a better term (so its probable MS because of an unusual presentation of an unusual disorder) but I cant help thinking that the lesion being where it is is the result of long term stress becoming a chronic physical condition. I have seen 1 research reports considering the correlation between DID (dissociation identity disorder which is created through extreme and repetitive events causing complex post traumatic stress disorder) and MS lesions. No tis not ironical but to label it as such helps me manage some times.!
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