Hi from NZ, needing some serious support, being diagnosed

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Hi from NZ, needing some serious support, being diagnosed

Postby Archie » Sat Mar 10, 2012 1:09 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....
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Re: Hi from NZ, needing some serious support, being diagnose

Postby NHE » Sat Mar 10, 2012 2:54 am

Welcome to ThisIsMS. I believe that you will find a supportive community here.

Archie wrote:couldnt light a cigarette


That might be a good thing. Studies have shown that people with MS who smoke have faster disease progression than those that don't. It might be a good time to quit.


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Re: Hi from NZ, needing some serious support, being diagnose

Postby want2bike » Sat Mar 10, 2012 6:07 am

I agree with NHE. Our health is determined by the things we put in our bodies. Many are looking for the easy way out. Saying it is all genetics does no good. If you are not willing to change what you are doing there is very little which can help. Things we put in our bodies will make us sick. You need to make a choice now. If you develop a healthy diet and stop putting bad things in your body you can take control of whatever you have. Doesn't matter the name they put on your disease the diet is the key to the body healing itself. Check out the diet section on this site and you can get the information for healing your body.


http://www.youtube.com/watch?v=AlK6s1OQ ... re=related

http://www.youtube.com/watch?v=ZAhu6oa_ ... ure=relmfu
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Re: Hi from NZ, needing some serious support, being diagnose

Postby Archie » Sat Mar 10, 2012 12:49 pm

Thanks. I had quit smoking, took it up again out of worry about whats going on. I have every intention to quit as soon as I can.
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Re: Hi from NZ, needing some serious support, being diagnose

Postby MarkLavelle » Sat Mar 10, 2012 1:55 pm

Archie wrote: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....
Nothing to be sorry about!

Based on all you just wrote, I'll bet you're going to go right ahead with your political and family plans for your future. "Blind in a wheelchair with home help" is counter-productive projection to the max. You MAY end up that way SOME DAY, but today you've just got some problems you need to figure out how to work around. And I'm betting that rising above it is in your nature.

You can do this!

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Hi from NZ, needing some serious support, being diagnose

Postby Archie » Sat Mar 10, 2012 8:43 pm

Thanks Mark for your kind reply, it is the sort of thing I need to hear. No offense to anyone but I've just been hit by a train. Its a little too raw for me to be lectured about diet etc yet. I hope thats ok for people. I am certainly NOT looking for any easy way out.
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Re: Hi from NZ, needing some serious support, being diagnose

Postby jimmylegs » Sun Mar 11, 2012 5:22 am

hi there archie, sorry to hear you've been going through a rough time :(

since nutrition is my forte, here are some info links.

Pregnancy and Delivery in Ehlers-Danlos Syndrome: Role of copper and zinc
http://informahealthcare.com/doi/abs/10 ... 8409156699
"serum zinc and copper levels were determined ... the concentrations of both trace elements were low."

that doesn't say too much - you'd expect zinc to be low at the end of a pregnancy anyway. but it is a reasonable thing to test regardless...

these next two show conflicting results in a set of case studies. unfortunately with the sample size being so low the overall significance of these studies is virtually nil, and without full text access and a translation, we can't further critique methodology, or conclusions drawn from data. but, zinc and copper might be worth investigating. there's certainly plenty of very detailed info about zinc as it pertains to ms (and membrane integrity in general) here on this site.

[A case of Ehlers-Danlos-syndrome and its zinc therapy (author's transl)].
http://www.ncbi.nlm.nih.gov/pubmed/566822
[Article in German]
An 8-year-old boy presented a typical Ehlers-Danlos-syndrome. The light- and electromicroscopic findings of both skin- and muscle-biopsy cannot explain the symptoms. A deficiency of zinc and, resulting from this, a defective cohesiveness of collagenous and elastic fibres seems possible. After oral zinc treatment a significant therapeutic effect was seen.

[Treatment of the Ehlers-Danlos syndrome with zinc (author's transl)].
http://www.ncbi.nlm.nih.gov/pubmed/574590
Oral administration of zinc sulfate did not improve the clinical conditions in two patients with Ehlers-Danlos-Syndrome type I. Zinc levels in serum and hair were normal before and during treatment.

here is a very informative article (doesn't pay much attention to nutrition though).
http://emedicine.medscape.com/article/943567-overview
table 1 on this page looks very useful - you may be able to clarify what type of ehler's danlos you are dealing with..
http://emedicine.medscape.com/article/9 ... ical#a0217

overall things like bruising and poor wound healing red flag zinc for me, but it is not really touched on in that article. will do more digging but have to split for work for now. more later.

my signature links below include more personal info and some additional ms resources that i have found particularly useful.

in addition my two favourite food and nutrition sites are www.whfoods.com and www.nutritiondata.com
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Re: Hi from NZ, needing some serious support, being diagnose

Postby euphoniaa » Sun Mar 11, 2012 6:14 am

MarkLavelle wrote:
Archie wrote: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....
Nothing to be sorry about!

Based on all you just wrote, I'll bet you're going to go right ahead with your political and family plans for your future. "Blind in a wheelchair with home help" is counter-productive projection to the max. You MAY end up that way SOME DAY, but today you've just got some problems you need to figure out how to work around. And I'm betting that rising above it is in your nature.

You can do this!


Archie wrote:Thanks Mark for your kind reply, it is the sort of thing I need to hear. No offense to anyone but I've just been hit by a train. Its a little too raw for me to be lectured about diet etc yet. I hope thats ok for people. I am certainly NOT looking for any easy way out.

Hello, Rachael, and welcome!
You're in a tough situation, but I have to second Mark's encouragement that you will have the strength to work through all these issues. We're here for you to vent, complain, or ask future questions as the need unfolds.

Until then I'll just send you soothing, healing wishes with no lectures or advice at all! :smile: Please keep us posted on your health.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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