MS and Gall bladder or was it the Gall Bladder and MS?!

Ok. Here we go. The latest news. Background explanation: MS is a disorder of the Central Nervous System (CNS). The CNS system is made up of the brain and spinal chord. In the brain there are 12 (poss 13) major cranial nerves.
olfactory nerve (I), smell
optic nerve (II), vision
oculomotor nerve (III), eye movement
trochlear nerve (IV), muscle of the eye
trigeminal nerve (V), face sensation
abducens nerve (VI), another muscle of the eye
facial nerve (VII), taste, controls muscles of facial expression vestibulocochlear nerve (VIII),transmits sound and balance
glossopharyngeal nerve (IX), aids in tasting, swallowing
vagus nerve (X), control of the heart and digestive tract.
accessory nerve (XI), functioning in motor control head and shoulder

The spinal cord is responsible for the other body functions.
Up until now, I have had one small lesion confirmed in my mid brain. However, because of its location, when my MS flares the myelin is affected across 1 or more of the cranial nerves. Therefore at any one time I have one or a combination of problems with i (smell) ii (vision) v (face sensation) viii (sound and balance) IX (taste and swallowing) x (vagus nerve). So 6 of the 12 cranial nerves have been affected by the MS disease process.
hypoesthesia -numbness
parathesia - pricking
dysesthesia - intense pricking
ataxia - balance
dysarthia - speech
nystagmus - eyes
uthoffs phenomenon - heating
myokemia - muscle tics
MS hug- girdle band sensation - intercostal muscles paresthesia
mild pharyngeal phase dysphagia - swallowing
mild asymmetry on lateralisation - face
Peripheral neuropathies - burning feet syndrome.
Depression

Ive learnt to live with that. Ive identified these things.
I have processed them. I live with the base line. I cope with the exacerbation's. Probably had it for 30 years when I look back. Provisionally diagnosed 12 years ago. Confirmed 9 years ago. I consider myself lucky. No spinal cord involvement. Those that get lesions on spinal cord can get paralysis. Mine is relapsing remitting, and not primary progressive. I know the stats that I have 50-50 change of eventually a relapse could start a secondary progressive slide. Everything been well controlled for 4 years. Right meds combination. 30kg weight gain but moving, and functioning. Even the tachycardia I developed in 2011 has a correlation with MS. So where is all this going? Today I learn that the bladder dysfunction, and associated pain present post gall bladder op is most likely the onset of what 80% of MS sufferers get as part living with MS. Infections gone. No stones. Operation a success. All these years of pain starting to make sense. We have now eliminated the gall bladder as pain source and the problems caused through that many stones are gone and left with.... It seems there is probably a lesion on my spine now. What does that mean? We cant MRI this because of a titanium knee, and given I already have a diagnosis they dont use that expensive resource confirming that. Ironic isnt is. Pain in a place that triggers sexual abuse memory. I said in 2003 that my out point would be the day the bladder starts doing things and I wont have treatment for that part of my body. I wont be invaded. So today I have cried, screamed, yelled, thrown things, texted health professionals, talked with M, eaten fru jus (ice blocks) and now I am writing this. It is a mixture of relief of a plan and knowing and extreme emotions. I am breathing, trying to develop the same philosophy I've had when confronted with news of a new MS development when I havent had anything new in 4 years, taking the steroid treatment, calling in sick to work and life, living w the unknown, the random, the unfair, the paradox, the grief, the chronic loss of energy and trying to find the hope, the Ive got this covered like I have before.... just excuse me a bit while I disappear under the blankets and say f**k.

Chronically Confident and Competent

Someone said to me recently that if they didn't read my FB statuses they wouldn't know I have things like MS, Tachycardia, PTSD, anxiety, osteoarthritic leg pain w knee replacement, complex medical things interacting. I look so competent. Yeah. Made me think. Have always tripped over the issue of me looking competent and confident coupled with struggling to ask for help, or even recognising I need help. The MS is a hard one as it is obvious when it is acute but not so obvious when little clusters of things occurring nor so obvious when the chronic ongoing nature means it is just there all the time. It is a struggle to find or attempt to find the balance of saying and not saying, or reminding,educating, reeducating. Then there are times I want to be quiet and invisible about it because talking about it is to hard. I have been reminded that when I say to people I have MS ( and lately have been tempted to have it permanently tattooed on my head so people can see that), that doesn't always have any meaning. MS is different for different people. So.. here goes. Summary: For me.... at all times I am in some kind of physical pain. At any time you ask I could name in which parts of the body where the numbness, aching, stabbing sensations, sharp pins and needles, itchy pins and needles, muscle flicks, throbbing, burning pains are, and I am usually having trouble with swallowing and feeling the parts of my face and throat mechanisms needed to play trumpet and sing. Thats the chronic ongoing stuff. The fatigue is chronic fatigue, not tiredness. Paracetamol and other pain reliefs don't stop these pains. When in an acute episode one or all of these things intensify. This is an exacerbation if its only for a few days. A relapse if over three days. What I live with after each relapse ( about 2 a year) I go back to a different bottom line of pain. I think that means I am slowly progressing. The relapses are random. I also can get episodes where my hearing and vision are affected. Those pains can be there all at once, they can be in clusters, they can be on their own. I overheat easily. I also have cognitive problems re understanding logic, conceptual etc and it gets in the way of remembering and learning. Music is my main therapy for all this as I can control a lot of what I do, plan how I teach and get huge pleasure from the results. Throw in random attacks of gall stone pain which is like some episodes of MS stabbing pain in the intercostal muscles, tachycardia events requiring emergency intervention and PTSD (which exists because of child sexual abuse) flares. It is ironic that the effects of child abuse has meant lots of therapy around surprises, hypervigilence, de stressing, recognising and managing triggers, lessening the likelihood of surprises and I have ended up with illnesses that do all those things. Or maybe its correlation rather than ironic. I think sometimes there is causation operating as well. Whatever it is, I live with daily physical pain, in a chronic way, with random attacks of acute from various illnesses, which all scares the shit out of me a lot of the time, and if I am appearing confident and competent, I probably am, but just may be overcompensating to prove something (to whom I don't yet know.) And right now where I am at with all that is, I need to be considerably better than I am in order to be stepping on a plane in 41 sleeps time and that feels incredibly un -fu&&ing-fair.

letting off steam

oooooommmmm. ahaoooommmm. (chanting mantra). I will make friends with my MS. We shall learn to enhance each others existence and live happy in a symbiotic connection so that we are in harmony with the world an all our external connections. aoooommmmmm. mmmmmmm. hmmmmmmm. In achieving this heightened state of love, world peace will follow for all mankind and frustration will no longer exist to block our channels. aaaaooooommmmm. In reaching this nirvana, MS will go and be so integrated into me, it will no longer exist. aooooooommmmmmm. hmmmmmmmm.

inspired word muddle

Later life became light.

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)

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

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.!