My AS diagnosis and experience

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[color=indigo:91ab12e47e][i][color=indigo] sad Hi, I was diagnosed with AS just 3 days ago. I'm 32 yrs now but started becoming unwell in my teens. When I was a teenager, I suffered chest pain; recurrent severe diarrheoa and abdominal pain; tight chest and inflammation in my hand. Doctors didn't indicate any problems and I carried on as normal. I was ill every week with my stomach troubles.

As years went on, I suffered severe aches and pains in back, hips, neck, shoulders and head. My hips were very bad at one point and I suffered migraines regularly. My exhaustion had become very difficult recently, making life at work a struggle, because I felt as though I could easily just lay down in the office and sleep there and then, as I was that tired.

About 4 months ago I just couldn't take it anymore, having suffered various problems for almost 20 years, so I pleaded with the GP to refer me to a specialist. I saw a rheumatologist who did blood tests and x-rays. 3 days ago he told me I had AS. My spine and chest showed definite signs and I tested positive for the HLA-B27 gene.

In some ways its a relief to know that there is an explanation for all the years of problems, but also quite distressing to know about it aswell. I am quite sad that I wasn't diagnosed in my teens, when I did go to a doctor and a hospital with my early symptons. It would have saved me a lot of pain and distress.

Anyway, now I can move forward at least. I have been given anti-inflammatory treatment and been referred for hydro-therapy. So maybe my pain will ease in the near future smile [/color:91ab12e47e]

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  • Posted

    Your story is very similar to mine. I can honestly recommend The Low Starch Diet by Carol Sinclair, published by Vermilion. It transformed my life.
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  • Posted

    Don't be down about it Lynn, I have AS too! But I don't see it like that. I see it that AS has Kenny as I am far tougher than it will ever be.

    I have a long story but very simillar to you. Actually the reason I looked online just for a UK forum is becasue my ribs are so painful and I really wanted to speak to people in the UK about there view on AS.

    I am very active and exercise in the period I dont have much pain. One of the main aspects of AS is keeping yourself happy. I know its far easier said than done but sometimes its best to thank yourself that you have come this far and that in the big pot of illnesses and diseases it could be worse.

    If you want to talk further I am available on MSN, email etc and would love to pass any advice I have on to you.

    Kenny

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    • Posted

      Hi All

      My arthritis started at age 17 - the same as my Dads - he has had 2 hip replacements and in the 1970's had severe gut trouble and ulcers from NSAID's.  His disease progressed quickly with a frozen neck, spine rib cage and the hips.  He is 70 this year - and doing well despite his history [smile]

      My problems started in my back between my shoulder blades, spine and neck at age 17 - and also a sore shoulder rotatorcuff.  I was tired a lot of the time but my disease was not as severe as my Dads had been at the same age

      At age 19 - my mother took me to a private clinic in Bansted, Surrey as I was getting rib stiffness, sternum pain, and my midle back was very sore - and occassional lower back pain.

      I would spend hours in the evening stretching - laying on my front, rolling around (to click my back) and sometimes hanging from the landing half way up the stairs to stretch my back and neck that felt like it was stiffening.  I had refused NSAIDs because of my Dads history - I am so glad I did.

      This trip to the Burghwood Clinic was my first path to alternative health - but realised later that they were actually more aligned to mainstream - and were mentioned in the Lancet regarding studies done by rheumatologist, Gail Darlington in to elimination diets.  The doctor I saw there, Dr. John Mansfield went on to write books about diet and arthritis.

      I was 19 - and was put on a strict elimination diet which limited me to about 7 non-allergic foods and mineral water over a 2 week period - I remember being with my now wife at Haywards Heath market and being able to smell a jacket potato and coffee about 1/2 mile away!  It was hard work - and then when I went back to the clinic I said I didn't fell much difference.  I went for another 2 weeks with a few modifications.

      I was just 19 and my disease at this stage was not full on aggressive but more painful - I remember on the last few days of my 4 saying to my wife, I feel looser and less sore, however I told the consultant that I was not sure that I was better.  I was guilty about the money my mum was spending on the treatment - and it was hard to differentaite old stiffness and damage from new inflammation at this early stage of my disease.  I was a born optimist - and was a sceptic.     

      I returned to a normal diet - you know the 1980's Findus crispy pancakes, McCain frozen pizza that my working mother used to give us mid-week. eek

      I kept up the stretching - and I had in mind the improvement that I thought I had felt and I did always think that my good days and bad days or stiffness and pain were driven in some ways by what I ate - or related to my bowel movements (too much information.....). 

      Between age 19 and 26 - the disease slowly got worse with lots of lower back pain, lumpy feeling sore back, limping from stabbing sore hips, rib cage.  Some days I would come home from work and just sleep at 4.30 afternoon.

      However, I still kept quite fit and exercised a lot - which is very good with AS - I even did karate, swimming, squash.

      At age 26 after some stressful times my disease hit me hard - I got new levels of pain, I used to ask my wife to stand on my back (not kinky!) to massage the stiffness of the muscles either side of my spine and to pull my legs to stretch my hips.  I have quite a high pain thresh hold.  I took pain killers like ibruprofen sometimes - with regular migraines a factor in my overall state. 

      Then the breakthrough - a friend of my wifes had been completely bedridden with ME and had visited a Dietician in Canterbury and had improved  massively... I was scepticial.  I was told that I was reacting to Wheat, Corn, Cows Milk, Red Wine.  AArgh - my favourite treat was 2 chocolate digestives and a glass of milk!

      The other thing the dietician gave me was supplements -

      - Magnesium / Calcium combined ration Magnesium 2 to 1 Calcium

      - Manganese Citrate

      - Zinc

      - Selenium

      It took just 2 months and I started to feel less stiff and less pain - a few times I got weak and couldn't resist a pint of beer or Guiness and my god! the pain in my hip... there was definitiely something happening.  It took me a good year or two of occassional lapses for me to realise that I had to be good 100% of the time with certain foods. I drink red wine today. 

      I even got to the stage that when I had wheat in food I would get a nosebleed - and could tell if I had eaten wheat as I would get sore blind spots in my nose, like infected hair-folicules.  After eating wheat or corn I would get 2 weeks of pain - and lethargy.

      In the first 10 to 15 years I was eating 100% Rye bread and I did not react - and Oat Cakes and marmalade were my staple breakfast, but I have now given these up too.

      So now - I check everything - no Glucose Syrup (because its corn / wheat based), no bread unless I make it myself with Rice Flour - I cook a lot and can make a great pizza with Rice Flour.  We eat no packaged foods at home - just fresh cooked.  I have been "glutened" by the occassional Indian takeaway.

      Last month before Easter - I ate a huge bag of Cadbury Mini Eggs over 2 days - mostly after a work do hangover - the next 3 weeks were hell as my hip started to get sorer and stiffer and my lower back seized to the point where sitting down - especially in a car seat was agony.  I didn't take any NSAIDs.  

      I strongly believe that that my disease improvements are driven by a few factors -

      - Gut flora balance (lower carb means less inflammation)

      - Enhance your gut flora with fermented food

      - Removing grains that can cause intestinal permeability

      - My use of supplements that I have stuck to for 23 years (I have recently though that manganese is more important than I had realised). I guess they are my medication 

      - No NSAIDs ever - hard I know, but I have had pain recently and the odd headache where I have just said to myself - they will do more damage in the long run

      My further recent improvements cutting out oatcakes and rye - and for breakfast I have a Waitrose / Sainsury Sheeps Milk Yogurt with Honey and generous amount of Omega Seeds (Sunflower, Pumpkin, Sesame, Linseed mix) mixed in... so delicious and keeps me full all morning because of the high protein. 

      Some days I will have a banana - and a bag of Walker Light crisps - yes a strange breakfast but my nutritionalist told me there was not much wrong with this as long as I had good food later in the day.  I have also been using the new Naked raw food bars - but cut down a bit as I think they are high in sugar.

      Lunch is often very low carb - with a Pret Salad with Chicken or piece of Chicken with a bag of "Steve's Leaves" - I look a bit strange sitting at my desk at work munching on handfully of rocket and watercress.

      On days when I have pain - which is not often these days - I take a whole pot of Yogurt with seeds, honey and a banana and grze on that all day.

      I usually have a normal meal every night - Meat and 3 veg, poatoes, Pasta with a sauce and meat, Omlette.  If my pain does continue for longer periods which is very rare - I go carb free on odd days. 

      I have read online about 200 pubmed / ncbi medical papers that link autoimmune disease to either diet directly or indirectly via the balance of gut bacteria - and this is where research is now. NOT SWITCHING OFF OUR IMMUNE SYSTEMS.

      It is our gut flora / bacteria that govern the immune response to other things that are in the gut - in recent years this gut flora has been called the Forgotten Organ

      The No Starch Diet is important in AS but is very restrictive - my assertion is that with a healthy gut free from damage from NSAID and increased permeability from grains ensures that the culprit "klebsiella" AS bacteria stay put - most of the time

      Take Care -  pm me whenever you like

      Sean

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  • Posted

    Hi guys hope you dont mind me jumping in but l have a lot of crap going on 1 doctor even said it sounded like l have as too but seen a rheumy and she ordered xrays etc which sghowed wear and tear to spine shoulders and straightening of lower spine. The reason this post stuck out was cos Kenny mentioned about his ribs............. l go through hell with rib pain sad chest and sternum area and mid upper back where my bra fastens. I am really pissed off of feeling this way l get no relief l can do less as time goes by l wont go on about it now but would love to hear more if anyone would like to share with me please. Thank you so much for your time xx
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  • Posted

    Hi Guest. My "tale" is far too long to go into in detail, so I won't smile Just to say I have had AS for 25+ years. In my neck, 5 off the top 8 vertebrae seized sold, 3 at the base of my spine. Have had all sorts of treatment, injections etc. Have the problem with my ribs also. I have gout, so it could be this that is the cause of the lumps on my ribs. The joints get flooded with uric acid & crystalize into rheumatoid like lumps in the rib cartilage. Painful when breathing in. I was told 25 years ago there was no cure, so I worked for about 12-15 years with it till I couldn't go on any more. Our friend Kenny is right about a positive attitude. I can't keep it going for long, but my hobbies do help take my mind off it.
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  • Posted

    Hi everyone. It has been six years since I made this post. Things have changed since my first diagnosis. When I saw the first rheumatologist, they did chest and lower back xrays and blood tests and diagnosed me with AS. I was told to go back a few months later. On my return I was seen by the senior consultant instead. He examined me and looked at my records and over-ruled the original diagnosis. He told me I had fibromyalgia and prescribed Pregabalin. He didn't give me any reasons why he felt that the original diagnosis was wrong, didn't give me any health advice and just told me to come back for more investigations. I left the hospital feeling confused and deflated. I went and got the prescription, but after reading the patient leaflet in the box, I decided not to take the medication. I am sensitive to medication and allergic to some. The side effects looked awful and I didn't want to risk taking them. About two days after being given the prescription, my GP phoned me and said that he was not happy with the medication I had been given due to my sensitivities and also due to the massive dose I had been prescribed. He said it would have been better to start me on a low dose to see how I reacted first. We both agreed for me not to take them at all. Due to all this confusion, I chose not go to back to my local hospital and I haven't seen a specialist since. Due to my on-going sysmptoms and discomfort I am not considering going back to a specialist, but I want to go to an alternative hospital. I don't have any faith in my local rhuematology experts which is a shame. The range of symptoms that have experienced all my life could fit into any one of several different conditions and I am really desperate now for someone to tie all these together and give me an answer. I might still have AS, but need an expert to find out for sure. It is very frustrating still not knowing what is wrong despite asking for help.
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  • Posted

    In my previous post, I meant that I am NOW considering seeing a specialist again!
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  • Posted

    Hi Lynny

    Your story sounds just like mine! Hips, guts, lower back, shoulder, neck, migraines!

    I was referred to a specialist called "The Burghwood Clinic" 30 years ago and have eventually come around to being intolerant to some foods - noteably wheat, corn and cow dairy. I am also aware of the bacterial link to AS with Klebsiella.

    I do the starch free thing for a few days at a time but dont need to as long as I stick to the other diet.

    From my own studies and research over 30 years I now know that nearly all automimmune diseases are caused by the bodies inability to process certain bacterial or dietary proteins - and that that inability is due to

    1. Mineral deficiencies - such as zinc / magnesium

    2. Leaky gut and bacterial balance in the gut and intestines

    3. Genetics - as badly modified proteins cause the immune system to attack us. Depending on our our genetics and the proteins involved the tissues / organs atacked will vary

    4. Food intolerance

    Specialists will not tell you this they only switch off the immune system with different drugs.

    I've been drug free over 20 year now - try a paleo diet as a start!

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  • Posted

    Hi everyone, thanks for the replies and advice. I had completely forgotten about my posts on here and it's been ages since I last gave an update. I received an email today from Tim asking how I've got on, so thought it best to share with everyone t details.

    I was actually in hospital today having a colonoscopy to investigate my tummy troubles. I'm currently at home feeling whoozy after the sedation. The prep and procedure were horrid and I wouldn't want to do it again. My most recent rheumy referred me to the Gastro comsulant who in turn ordered the colonoscopy which looks normal. 

    Since my last post, I was referred to a new rheumy at a different hospital. This was due to the fact that several years back, I hadn't had much luck with my local hospital rheumys and their indecision over my diagnosis. Unfortunately the new rheumy is brash and unhelpful. He did order an MRI of my spine and hips, but failed to tell me to stop taking my Naproxen anti-inflammatory tablets befoe the scan. Therefore the results were inconclusive. There were signs of wear and tear, but he said nothing unusual or indicative of AS, but he couldn't be sure that the Naproxen hadnt affected the result. I had asked to see a new rheumy at this time, because I had developed very painful upper back with chest pains and this prompted me to get seen again in the hope that maybe this time I would get an accurate diagnosis. 

    Sadly I was wrong. This rheumy told me to lose weight, give up smoking, walk a mile a day and come back in twelve months when he would do another  MRI. This was December 2014. He said that I probably did have fibromyalgia, but didn't appear convinced of anything. I left there with no more information than when I first saw him in the October. He did pick up on my irritable bowels, hence the referral to the Gastro, but personally I don't feel that this referral was needed. I think the IBS is linked to everything else. 

    So today I went through a horrid colonoscopy which was probably all for nothing. I won't see my rheumy until December this year. I have stopped smoking two weeks ago as instructed and have been going to the NHS stop smoking service. Not sure how to shed the weight at the same time as giving up the fags though. Not impossible, just difficult.

    I'm left here still in the dark with no light at the end of the tunnel.

     

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