Hi all.
my Friends and family call me Kez. I’m a 34 yr old bloke from Australia and a year ago I was active and never sat still. Always finding something to do and multi skills in almost anything hands on. Mechanic by trade but with lots of building and electrical experience. 5 years ago I built my own house and today manage two mechanical workshops and a fleet of blokes, I have thrived at being busy. Family life has been good with 2 young kids and a wife, the kids I’m watching grow, yet becoming more and more distant from. It’s not fair on them, I worry about them more than my own pain. I don’t want them to miss out because of me.
things started a year ago out of no where. Prior to this never needed to go to the doctor. My wife had to convince me to go.
started with extreme fatigue which I thought was maybe stress related . Removed the stress from my life for a while by holidays and breaks from work but didn’t improve.
then came the headaches, every day since it started.
cramping legs, arms, hands, feet
cold arms, hands, feet
The sun makes me feel unwell and gives me migraines and fatigue.
memory issues, speech issues, muddling up my words.
twitches, movements in muscles, biting/stinging under skin. Everywhere, side of face, arms legs chest even my arse. Some days my body looks like it’s playing music to a beat.
pins and needles in random places for no reason for 5 minutes.left shoulder, hands, arms, feet. Sometimes they just feel dead
skin gets randomly itchy, sometimes after the showers to hot or if I start sweating
my nerves hurt. It’s torture sometimes.
ringing in my ear and poping sounds
blurry vision, randomly but also now have binocular diplopia they say I could have optic neuritis, and possibly some red orange colour issue in my left eye.
have become clumsy running into things and randomly tripping
at the start I had an episode which I was bed ridden for 2 weeks and wanted to die. I couldn’t even function and my muscles all stopped working. If I did something it would make me ill.
lately it’s progressed to my bladder and now struggle to hold anything in and it’s always it urgent.
i have 2 hemochromatis genes and have had venesections but it makes me very ill when treating me for it drops my red blood cells to low and puts me back into bed.
im anemic yet have high ferritin(go figure? Someone that stores to much iron being anemic?)
im Borderline RA but at titre 13 it’s a maybe. Sometimes naproxen helps the pain in my legs.
I have ANA antibodies
no std, no active virus eg epsin, Ross river, Q fever etc.
they say could be lupus but can’t prove it
keep mentioning MS, but cant prove that either.
ive done CT scans, MRIs no lesions showing up, ultrasounds. All come back okay so far.
EMG on hands, arms, legs and feet okay.
have just been tested for myasthenia gravis, waiting on test results.
lots of urine tests for all those type diseases around liver and badder which come back fine.
my bloods are okay bounce around a bit but not to far out to say I have any issues they all correct themselves.
b12 is fine vitamin D is low(I spend all day in the sun?)
calcium has been low? I live off milk and cheese. Fine with bread etc. I have cut these out a lot at once stage but didn’t seem to help.
i vomit a lot, and red meat I can’t keep down and no longer digest.
Im lucky my work is good about it all, as I’ve been there 15 years, I either go into work or I don’t and still get paid.
They tried me on amitriptyline, this made feel like I had bugs under my skin constantly, have tried me on cymbalta which made me want to kill myself, what a horrible drug.
ive gone back to no drugs as they impare my brain function and it’s the only thing I have left.
im not depressed at this stage but do worry what the continued limbo does to your mental health, I know it has changed me somewhat.
Guess I’m trying to keep my brain active and in a good state as I see what mental health does to my workers and know your brain takes an active roll in your health.
i have an eye appointment coming up with a eye surgeon/neurologist who’s trained in finding these things so hopefully can give me some answers to what’s causing my blurs etc.
i have another neurologist appointment also coming up with someone new so hopefully can get some more answers
to date I seen lots of specialists and they all say they can’t help
me, it’s hard to find someone that gives you more than 5 minutes.
Sorry for the massive spill, I just don’t understand how you can have so many things wrong and go from a fully functioning successful bloke to feeling like your 90 , falling apart and no one has any idea what is wrong with you.
the Australian healthcare system is stuffed, I can’t just book an appointment Like some can overseas even though I have health insurance, health insurance is near pointless untill your in hospital, need to wait months to get in anywhere and always need referrals, no wonder people spend years before they get a diagnosis of anything.
one thing is least my battery of scans and bloodtests have mostly been cover or partially covered by the government Medicare scheme.
MS,lupus,myasthenia gravis, autoimmune or something neurological i really am beginning to understand people’s nightmares, what people with disabilities go through and feel that I took for granted what I once had, unfortunately it’s looking like I will never have that life back again.
for all those other people in limbo don’t let them tell you its just in your mind, that it’s a virus and it might go away, keep chasing for an answer if you know it’s not right and if someone only gives you 5 minutes don’t give them your $$, don’t be another number for them see someone else.
my Friends and family call me Kez. I’m a 34 yr old bloke from Australia and a year ago I was active and never sat still. Always finding something to do and multi skills in almost anything hands on. Mechanic by trade but with lots of building and electrical experience. 5 years ago I built my own house and today manage two mechanical workshops and a fleet of blokes, I have thrived at being busy. Family life has been good with 2 young kids and a wife, the kids I’m watching grow, yet becoming more and more distant from. It’s not fair on them, I worry about them more than my own pain. I don’t want them to miss out because of me.
things started a year ago out of no where. Prior to this never needed to go to the doctor. My wife had to convince me to go.
started with extreme fatigue which I thought was maybe stress related . Removed the stress from my life for a while by holidays and breaks from work but didn’t improve.
then came the headaches, every day since it started.
cramping legs, arms, hands, feet
cold arms, hands, feet
The sun makes me feel unwell and gives me migraines and fatigue.
memory issues, speech issues, muddling up my words.
twitches, movements in muscles, biting/stinging under skin. Everywhere, side of face, arms legs chest even my arse. Some days my body looks like it’s playing music to a beat.
pins and needles in random places for no reason for 5 minutes.left shoulder, hands, arms, feet. Sometimes they just feel dead
skin gets randomly itchy, sometimes after the showers to hot or if I start sweating
my nerves hurt. It’s torture sometimes.
ringing in my ear and poping sounds
blurry vision, randomly but also now have binocular diplopia they say I could have optic neuritis, and possibly some red orange colour issue in my left eye.
have become clumsy running into things and randomly tripping
at the start I had an episode which I was bed ridden for 2 weeks and wanted to die. I couldn’t even function and my muscles all stopped working. If I did something it would make me ill.
lately it’s progressed to my bladder and now struggle to hold anything in and it’s always it urgent.
i have 2 hemochromatis genes and have had venesections but it makes me very ill when treating me for it drops my red blood cells to low and puts me back into bed.
im anemic yet have high ferritin(go figure? Someone that stores to much iron being anemic?)
im Borderline RA but at titre 13 it’s a maybe. Sometimes naproxen helps the pain in my legs.
I have ANA antibodies
no std, no active virus eg epsin, Ross river, Q fever etc.
they say could be lupus but can’t prove it
keep mentioning MS, but cant prove that either.
ive done CT scans, MRIs no lesions showing up, ultrasounds. All come back okay so far.
EMG on hands, arms, legs and feet okay.
have just been tested for myasthenia gravis, waiting on test results.
lots of urine tests for all those type diseases around liver and badder which come back fine.
my bloods are okay bounce around a bit but not to far out to say I have any issues they all correct themselves.
b12 is fine vitamin D is low(I spend all day in the sun?)
calcium has been low? I live off milk and cheese. Fine with bread etc. I have cut these out a lot at once stage but didn’t seem to help.
i vomit a lot, and red meat I can’t keep down and no longer digest.
Im lucky my work is good about it all, as I’ve been there 15 years, I either go into work or I don’t and still get paid.
They tried me on amitriptyline, this made feel like I had bugs under my skin constantly, have tried me on cymbalta which made me want to kill myself, what a horrible drug.
ive gone back to no drugs as they impare my brain function and it’s the only thing I have left.
im not depressed at this stage but do worry what the continued limbo does to your mental health, I know it has changed me somewhat.
Guess I’m trying to keep my brain active and in a good state as I see what mental health does to my workers and know your brain takes an active roll in your health.
i have an eye appointment coming up with a eye surgeon/neurologist who’s trained in finding these things so hopefully can give me some answers to what’s causing my blurs etc.
i have another neurologist appointment also coming up with someone new so hopefully can get some more answers
to date I seen lots of specialists and they all say they can’t help
me, it’s hard to find someone that gives you more than 5 minutes.
Sorry for the massive spill, I just don’t understand how you can have so many things wrong and go from a fully functioning successful bloke to feeling like your 90 , falling apart and no one has any idea what is wrong with you.
the Australian healthcare system is stuffed, I can’t just book an appointment Like some can overseas even though I have health insurance, health insurance is near pointless untill your in hospital, need to wait months to get in anywhere and always need referrals, no wonder people spend years before they get a diagnosis of anything.
one thing is least my battery of scans and bloodtests have mostly been cover or partially covered by the government Medicare scheme.
MS,lupus,myasthenia gravis, autoimmune or something neurological i really am beginning to understand people’s nightmares, what people with disabilities go through and feel that I took for granted what I once had, unfortunately it’s looking like I will never have that life back again.
for all those other people in limbo don’t let them tell you its just in your mind, that it’s a virus and it might go away, keep chasing for an answer if you know it’s not right and if someone only gives you 5 minutes don’t give them your $$, don’t be another number for them see someone else.
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