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#518750 - 05/30/18 10:52 AM cervicle discs detiororating
catlady Offline
Member

Registered: 04/02/06
Posts: 46
Loc: Kerman California
I am one of those who lurks around this site but hardly ever posts. This site helps so much. I have been on Enbrel since 2007, about a year ago my rhuemy changed to Humira/methotrexate inj because of severe neck pain. She thought Enbrel was no longer working. I have always had neck problems but this last year I am having very severe flares with debilitating pain. I am in bed because the pain is unbearable and usually lasts a few days. I have been on soma and norco for ten years and stopped them because did not like how they were affecting my body. Currently am taking tylenol/codeine#3 and flexeril(doesn't help much) My Primary care had me on prednisone last summer which made the pain better. I was on it for three months and soon after broke my metatarsal in my foot, and have been in an air boot since September. It is just now starting to heal. I have osteopenia and my rhuemy changed fosamax to Prolia injections every six months. The pred made my bones even more brittle and weak. Saw a neuro surgeon last week. She said xrays and mri showed all seven cervicle discs are deteriorating. Which means not a candidate for surgery. I have had three epidurals from a spinal dr with no relief. The neuro dr referred me to another spinal dr for a second opinion. I know many of you with AS are in much worse condition than me. I am usually upbeat but after the diagnosis from the Neuro I am feeling really down and hopeless. I don't want pity, only encouragement and suggestions.

Lupus diagnosed 1984
As diagnosed 2007
Humira/methotrexate inj
Prolia
Wellbutrin
zoloft
calcium, magnesium taurate, vit C, folic acid,Vit D, centrum 50
zytrec and weekly allergy inj
osteopenia
_________________________
AS diagnosed 2007 HLA-B27 positive
Lupus diagnosed 1984
Humira/methotrexate inj
Prolia
wellbutrin
zoloft
folic acid, calcium, vit D, vit C Magnesium Taurate.
Centrum 50
Total knee replacements rt and lft 2009

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#518751 - 05/31/18 05:00 AM Re: cervicle discs detiororating [Re: catlady]
Frederick
Unregistered


Originally Posted By catlady


I don't want pity, only encouragement and suggestions.



Surgery for A.S. is still rather unusual but if you are offered it then i would encourage you to go for it. There have been veriour advances in such surgery over the past few years and patients have benefited a great deal from it.

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#518752 - 05/31/18 07:17 AM Re: cervicle discs detiororating [Re: catlady]
catlady Offline
Member

Registered: 04/02/06
Posts: 46
Loc: Kerman California
Thank you Frederick. I talked to my Primary and she said to check into UCFS Or STanford. I live in central California in a small community. I sure hope my insurance is contracted with them.
_________________________
AS diagnosed 2007 HLA-B27 positive
Lupus diagnosed 1984
Humira/methotrexate inj
Prolia
wellbutrin
zoloft
folic acid, calcium, vit D, vit C Magnesium Taurate.
Centrum 50
Total knee replacements rt and lft 2009

Top
#518754 - 06/01/18 01:15 AM Re: cervicle discs detiororating [Re: catlady]
Janclebro Offline
Member

Registered: 09/26/16
Posts: 32
Loc: Cape Town, South Africa
Hi Catlady

I'd like to respond with a little of my own neck story. Neck pain first started to be an issue for me in the late 1980s. Initially I thought that posture and mattress might be the issue, so I bought a new mattress and worked on my posture! These measures helped a little, but certainly didn't resolve my problems. Over the next few years the pain came and went to some extent, but in 1996 after a particularly bad seven-month stint, I finally went for x-rays and was told that one of my cervical discs was completely deteriorated, another fairly bad, and that the neural foramina were growing closed. I was told I would eventually need surgery, including a spinal fusion. At this stage my flares of pain were becoming worse but still responded to medication, and would eventually burn out for short periods before flaring again.

In 2003 my husband and I were on a long road trip and I recall eating a bag of cashew nuts along the way. My neck pain started to flare and I tried readjusting my seat and position to improve my alignment and reduce my pain. Nothing worked. I went into my most severe pain flare to date, and now found that no amount of medication made any difference at all. I was unable to work - I spent three months sitting in a chair, propped up with cushions, barely able to move. An MRI revealed that a herniated disc was impingeing on my spinal cord and a fusion was scheduled.

By now I had noticed that dietary changes could make many differences to my life, and I couldn't help wondering whether there was a connection between that bag of cashews and the pain that ensued. Giving up all nuts appeared to make no difference, but I eventually decided to try giving up seeds as well. Within days my pain was gone. I cancelled the surgery - the orthopaedic was sceptical to say the least. Over the years I learned that I could occasionally eat nuts and seeds, but if I had a twinge of pain I stopped. I have no explanation for this, but have never again revisited the neck pain of 2003. I'm imagining that it has something to do with control of inflammation and swelling.

With an AS diagnosis, pain is a feature of my life, and while the nuts and seeds regime helped the neck pain, it didn't help the other problems. However the no starch diet has substantially changed my life as far as that is concerned.

I see you have two autoimmune diagnoses. Many on this site have found that when the medical world is unable to help, dietary and lifestyle changes become worth considering. There are countless testimonies to the benefits of the right changes. I wish you all the best in your journey Catlady, and trust you'll find the right resolution for you! - Jane
_________________________
Spondyloarthropathy with symptoms of AS, Sjögrens and fibro. Previously took Celebrex, Methotrexate, Trepiline, Prednisone which seemed to trigger a flare and my illness became much worse. Symptoms now kept mostly under control with NSD, as well as cutting sugar, dairy and yeast and food intolerances. Mostly pain free now and all symptoms massively improved.

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#518816 - 07/07/18 05:09 PM Re: cervicle discs detiororating [Re: catlady]
Kellybells Offline
Journeyman_AS_Kicker

Registered: 01/21/17
Posts: 131
Loc: Toronto, ON
Hi catlady, I can echo Janclebro's story about diet and neck pain. I wentstarch free in a desperate attempt to fix debilitating pain in my finger joints but was delighted to find that my severe neck pain and crushing headaches also improved dramatically when I cut out starch. I still have a limited range of motion but a lot less stiffness and a lot less pain.

Other tools I can suggest:

1. Gelatin powder

This is hands down the best supplement I have ever used for my joints (and I've tried them all). This is an old trick from the 1950's to strengthen nails and diminish wrinkles. But it's best use is for deteriorating joints. Plain gelatin powder contains building blocks of collagen, which is the main component of joint cartilage. I have had tremendous success with it, especially in my severely arthritic knees which improved dramatically within 3 months of starting it. I took 1 TB in the morning and 1 TB at night mixed with juice. Take it away from meals (it's a protein and amino acids compete with each other for absorption). Research with more expensive supplements similar to gelatin has shown cartilage regrow under MRI examinatipn; skip the expensive stuff, gelatin is inexpensive and very effective.

2. Vitamin K2 in the form of MK-7

I take this mainly for my teeth but it's also great for bones for the same reasons. Since taking it I haven't had a cavity and I stopped getting shin splints. It works by activating MGP, which directs calcium to the bones. There are different forms of K2 but the kind I take is the mk-7, which is found in the fermented soybean dish called natto. Natto is....an acquired taste but the supplements derived from natto are very affordable. Vitamin k2 is lacking in the current western diet (when's the last time you ate grassfed liver or pastured eggs?) and modern science is only now exploring its value (you can find lots of recent abstracts on PubMed but the science hasn't made it to practitioners yet).

Good luck. I hope you can find some relief.
_________________________
Suspected SpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

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#518817 - 07/07/18 07:43 PM Re: cervicle discs detiororating [Re: Kellybells]
Ann1965 Offline
New_Member

Registered: 06/17/18
Posts: 13
Thank you so much for your posts. I am doing vitamins, exercise and NSD and I do KNOX gelatin as that is what my grandmother did when I was a kid and now 54. Is it so nice that people are posting such great information on here. I am new to this and not doing medicine. Dr. Amy Myers book Auto Immune Solutions is excellent.

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