Hi from NZ, needing some serious support, being diagnosed
Posted: Sat Mar 10, 2012 12:09 am
Hi, I'm Rachael and I'm a 29 yr old mum, wife, politician, writer and advocate.
My mum has MS, she was diagnosed when I was 11. She was 33. My mum unfortunately had a lot of mental health problems as well and I went into foster care after a really rocky childhood at 15. We have not spoken in 10 years, my decision. Unfortunately for me that means not knowing medical history. My GP does, he's still her GP, but the Privacy Act etc has made things difficult until recently, where I became so ill he needed to go through files and connect dots. Bless him, he is doing great at finding answers without breaking confid!!
Anyhow.....
The pins and needles were the start of it. And the tachycardia that freaked the hospital out. I figured 1+1= heart and ignored the weird sensations in my left arm.
Then my left leg started going out from underneath me.
A month ago, I got very very ill. Couldnt walk properly, aching limbs, slurring speech, stuttering, smacking into everything leaving massive bruises that I'm still waiting to go away. My head is constantly spinning, my eyes are sensitive to light and I cant focus properly with them. My coordination has become poor.
When it didnt go away after 2 weeks and the sensation, weakness and utter exhaustion got worse, my GP was willing to consider things other than a virus. Battery of blood tests done, nothing.
I had shut my mother out of my life so well it wasnt til late one night that lightbulb went on in my head and my heart sunk through my shoes as I calculated her age at diagnosis. Then I Googled. Then my heart really went through the ground as I read down the list of symptoms and realised I had every single one.
Then told myself to stop being stupid and a hypochondriac and not to be ridiculous.
The next day at work (hotel housekeeping job I had been struggling with for weeks) I fell over twice, leg just went - first time I dropped a glass as I fell, tearing my palm open as I crashed on the floor. Second time I took out a towel rail grabbing it on the way down. I went home, feeling absolutely desperate. Rang my GP, went in urgently.
I brought up MS. Reminded him about my mum. Everything clicked for him too. He told me I could be right on. Did a run of sensation, strength and reflex tests and yup, all up the whack. Urgent referral to the neurologist sent off.
Next day he rings me back. Told me he'd been through some 'old files' overnight (I'm guessing my mums) and that I also needed testing for Ehlers-Danlos Syndrome, as it was in the family. Look that up. Uh huh. Explains the bruising and ridiculously slow healing and a few other serious health incidents in the past. And is comorbid with MS.
WONDERFUL.
So I am awaiting many many tests in the next couple of weeks. Meanwhile, the sensation in my left arm deteriorated so much over a few days that yesterday I couldnt feel a thing. I couldnt even clench a fist. It was absolutely useless. I couldnt type, couldnt knit, couldnt turn a key, couldnt light a cigarette. I was freaking out. Really freaking out.
It has improved today, but today I am slurring and I cant say the 'n' sound properly. I'm just so tired I just lie there, barely able to move.
I cant believe I'm being hit by this genetic bombshell. This seriously cant be happening. I ran for Parliament last year and did very well. I have a future helping vulnerable people, disabled people, abused people, people without a voice. I've been through so much crap in my life, risen above it, damn determined to make a difference. I cannot end up blind in a wheelchair with home help like my mother. I've got kids. A husband. We need my job. We have rent and bills to pay. I am running for council next year.
WTF am I going to do??!!! Sorry!!! What a vent....
My mum has MS, she was diagnosed when I was 11. She was 33. My mum unfortunately had a lot of mental health problems as well and I went into foster care after a really rocky childhood at 15. We have not spoken in 10 years, my decision. Unfortunately for me that means not knowing medical history. My GP does, he's still her GP, but the Privacy Act etc has made things difficult until recently, where I became so ill he needed to go through files and connect dots. Bless him, he is doing great at finding answers without breaking confid!!
Anyhow.....
The pins and needles were the start of it. And the tachycardia that freaked the hospital out. I figured 1+1= heart and ignored the weird sensations in my left arm.
Then my left leg started going out from underneath me.
A month ago, I got very very ill. Couldnt walk properly, aching limbs, slurring speech, stuttering, smacking into everything leaving massive bruises that I'm still waiting to go away. My head is constantly spinning, my eyes are sensitive to light and I cant focus properly with them. My coordination has become poor.
When it didnt go away after 2 weeks and the sensation, weakness and utter exhaustion got worse, my GP was willing to consider things other than a virus. Battery of blood tests done, nothing.
I had shut my mother out of my life so well it wasnt til late one night that lightbulb went on in my head and my heart sunk through my shoes as I calculated her age at diagnosis. Then I Googled. Then my heart really went through the ground as I read down the list of symptoms and realised I had every single one.
Then told myself to stop being stupid and a hypochondriac and not to be ridiculous.
The next day at work (hotel housekeeping job I had been struggling with for weeks) I fell over twice, leg just went - first time I dropped a glass as I fell, tearing my palm open as I crashed on the floor. Second time I took out a towel rail grabbing it on the way down. I went home, feeling absolutely desperate. Rang my GP, went in urgently.
I brought up MS. Reminded him about my mum. Everything clicked for him too. He told me I could be right on. Did a run of sensation, strength and reflex tests and yup, all up the whack. Urgent referral to the neurologist sent off.
Next day he rings me back. Told me he'd been through some 'old files' overnight (I'm guessing my mums) and that I also needed testing for Ehlers-Danlos Syndrome, as it was in the family. Look that up. Uh huh. Explains the bruising and ridiculously slow healing and a few other serious health incidents in the past. And is comorbid with MS.
WONDERFUL.
So I am awaiting many many tests in the next couple of weeks. Meanwhile, the sensation in my left arm deteriorated so much over a few days that yesterday I couldnt feel a thing. I couldnt even clench a fist. It was absolutely useless. I couldnt type, couldnt knit, couldnt turn a key, couldnt light a cigarette. I was freaking out. Really freaking out.
It has improved today, but today I am slurring and I cant say the 'n' sound properly. I'm just so tired I just lie there, barely able to move.
I cant believe I'm being hit by this genetic bombshell. This seriously cant be happening. I ran for Parliament last year and did very well. I have a future helping vulnerable people, disabled people, abused people, people without a voice. I've been through so much crap in my life, risen above it, damn determined to make a difference. I cannot end up blind in a wheelchair with home help like my mother. I've got kids. A husband. We need my job. We have rent and bills to pay. I am running for council next year.
WTF am I going to do??!!! Sorry!!! What a vent....
Please keep us posted on your health.