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#519361 - 01/14/19 11:05 AM Kicking Opiates
Melliej Offline
New_Member

Registered: 06/09/13
Posts: 7
Hello,

It’s been a long long time since I have been on KickAS.

Let’s just say I was an enigma to my rheumatologist. He had specialised in women with AS at the Mayo clinic, and in his career that had spanned 40 years, he had only had one other patient that did not respond, or like me was either allergic or too sensitive to the meds.
In my family all of my 3 siblings have it, but us 2 youngest have it quite bad.

My 1/2 cousin here has it too, and I suspect my Aunt and Grandad had it too, as they both had hip replacements and my grandad developed pulmonary fibrosis.

Two of my kids tested positive, my son Cailean who is now 23, walks with a cane.

I was put on hydrocodone back in 2002.
Finally diagnosed after 20 years at the age of 36 with AS.
Unfortunately what worked for my son Remicade I can’t take due to have growing up in England and having the BC shot ( tuberculosis).

Back in 2015 he referred me to a pain specialist who did shots into my back, but they too didn’t work, I would feel like a ten ton lorry had run over me afterwards.
So I was put on oxycodone, by December 2016 I was on 7 30 mg oxy and 3 long acting morphine.

I have numbness pins and needles all over my body, it’s gets as bad as when you have sat on your feet. Especially bad in my face mouth tongue head, spine legs feet hands.

Back in June 2018 I decided to stop them and did it by vaping marijuana oil.
And the gummy editables.

It took 4 months, I’m still recovering obviously because of the amount of years I was on them.
6 times I went to detox, 1/2 way through they would stop and put me back on them.

I was told I needed a quality of life, yeah right.
Maybe for some people opiates are ok.
I was put on them, when it was the standard drug, when other meds hadn’t worked.

Unfortunately too it often masks other things you may have going on,.

A lot of people put weed down but in certain people I think that this is far better than the drugs they put us on.


Hopefully I don’t anger anyone from this post.

But having a near call where I nearly lost my life to them( I hadn’t slept for 5 days) taken my first dose for the day and was found unresponsive. They told me due to no sleep, the receptors in my brain had overloaded.
Some may say I should have gone to the doctors but when you live with chronic pain everyday, well stiff upper lip and all hehe.

The clue which the Doctor found the diagnosis was not just being a Brit but Native American.

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#519362 - 01/14/19 11:15 AM Re: Kicking Opiates [Re: Melliej]
Melliej Offline
New_Member

Registered: 06/09/13
Posts: 7
Strangest symptoms I have is not being able to feel your face, like when you rub or scratch it, same goes for my legs.
Arms etc, it’s so weird especially the pins and needles in my head. Had 4 MRI’s, can AS mimic MS/ Lupus.
I too tested positive for RA.

Question: My eldest daughter has some of the same symptoms but didn’t test positive for AS!

Can she have it without the gene,

They have found she has celiacs which I think is on the HLA.
She is on a gluten free diet but still in a lot of pain in her joints,


Edited by Melliej (01/14/19 11:17 AM)

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#519363 - 01/15/19 06:58 AM Re: Kicking Opiates [Re: Melliej]
Cymro Offline
Active_Member

Registered: 11/01/18
Posts: 55
Originally Posted By Melliej


Question: My eldest daughter has some of the same symptoms but didn’t test positive for AS!

Can she have it without the gene,



There seems to be less emphasis by the "medicos"on the HLA-B27 gene these days probably due to the fact that you can have A.S. even if you don't have the gene.

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#519365 - 01/15/19 09:07 AM Re: Kicking Opiates [Re: Melliej]
EricaK Offline
Royal_AS_kicker

Registered: 06/23/10
Posts: 3845
Loc: Colorado, USA
Hi heart

I'm sorry to say your family sounds a lot like mine. I test positive for pretty much everything rheumatic - and plaques in my brain that are supposedly hemiplegic migraines. I have a sister who tests negative for everything but has been long diagnosed with SLE, RA, and trigeminal neuralgia. A few years ago I decided to go with whatever makes me feel the best and ignore the diagnoses. So far my denial is working for peace of mind. Charlotte's Web has helped more than anything lately and doesn't make me feel weird. I've been off daily opiates and muscle relaxers for several years now, but am going in for a ketamine therapy eval this AM.


Peace, Erica
_________________________
ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!


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#519367 - 01/15/19 12:46 PM Re: Kicking Opiates [Re: Melliej]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6096
Loc: Reno or SFLU Philippines


Hello, Melliej:

Quote:
Question: My eldest daughter has some of the same symptoms but didn’t test positive for AS!

Can she have it without the gene,


The test for the HLA B27 gene segment is very inaccurate and over 50% of AS+/B27- incoming patients at The London Middlesex AS Clinic actually retested B27+. I do not trust this test, especially in a child with similar symptoms to the parent who is B27+. Statistically, this is not impossible--just almost!

AS is transmitted by genetics and also by diet, and in a family who eats the same kinds of AS-producing things, the potential for a genetically susceptible person to develop AS is very high. Gluten-free is a good start, but the substitutes are very bad for those of us with AS.

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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