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Re: Diagnostic Help? [Re: vosadrian] #282526
02/01/19 12:55 AM
02/01/19 12:55 AM
Joined: Jul 2006
Posts: 6,624
New York
Banana Offline
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Banana  Offline
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New York
Some important info you need to stress. You wake up stiff? For how long??? Exercise helps. Both ankles (my issue for years too). I beg you while there to get a script for PT for your ankles. Doing the wrong exercise can cause more damage and special shoes really help.

I beg of you to focus on diagnosis and treatment and try diet once you have a treatment plan. A doctor who will treat you aggressively is very important. That is the protocal now. A lot of damage happens the first 10 years. I can never stand long on my ankles, nor even hike because of the damage before treatment. I tried all the diets and none of them help. Please, early agressive treatment is important. Try diet once you are better.

Though I have the gene, my other blood work is all normal (for imflammation) hopefully the doctor will realize that is fairly common with AS.

Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Diagnostic Help? [Re: vosadrian] #282527
02/01/19 02:40 AM
02/01/19 02:40 AM
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vosadrian Online OP
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Thanks again all,

I found Tacitus signature. Have just read his story. Wow, I am certainly a lucky one so far. Makes me a little concerned about the ibuprofen I am taking.

My ankles are my longest symptom of my pain. When it first happened, It was very low on the heal near where the top of the back of the shoe rubbed and I struggled to wear shoes. I also limped a lot. It was treated as achilles tendonitis so PT was stretching and heal drops. It was during this time that the other side started to hurt also... the only work it was doing was lifting me for my 60 or so heal drops a day. I had lots of imaging done and mostly they found no evidence of anything wrong there. Some said minor tendonosis. One common theme was subtalar synovitis, but injections in there made no difference to pain. Incidentally I recently see that subtalar synovitis can be a symptom of AS. Anyway, at one point I had cortisone injections into the TFL tendons, and this provided some relief. I can now wear shoes and walk without a limp. I still get constant pain and the pain has moved higher up the tendon... but I can do most activities without the pain becoming so bad I stop them. My pain seems to differ from tendonitis in that it is constant and does not resolve with rest... feels better with movement. It feels worse from doing heel drops. No PT has ever helped it. I am interested in what damage can happen to peripheral joints that becomes permanent and if there are ways to undo the damage either surgically or conservatively.

I am hoping for some help from the Rheumatologist when I see him. We will see. This thread has informed me so I can go well prepared into the appointment. I know here in Australia that they require some pretty strict conditions to be met to use Biologics within the health system... and that mostly means only more advanced disease gets access. Seems counter intuitive, but I guess the drugs are expensive. I will push for the most aggressive treatment I can get.

Re: Diagnostic Help? [Re: vosadrian] #282659
02/19/19 04:16 AM
02/19/19 04:16 AM
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HI All,

Just an update. I saw the Rheumatologist who I had seen before. He was good and seemed to think that the progression I have had probably indicated something of the SpA variety was effecting me, but he could not find much in the way of radio-logical evidence in recent imaging I brought along for hips/spine (which included SI joints). He said he had dealt with a number of patients like me who despite a lack of imaging/bloods evidence had been treated as SpA and achieved good response to treatment, and he was willing to try that with me. Unfortunately some of the treatments (biologics) in Australia require evidence I can't provide for government subsidy, so it may involve some $$ from me for a short trial period. But we have NSAIDs and DMARDs to try first, so hopefully they help. Of course if biologics are the only thing tp work well, I will need to find a way to manage that long term..... buy a lotto ticket???

I want to couple this with some diet changes. I have been on a low inflammation diet for a couple of months, but have not tried starch free, so may try that. But would I get a answer to the diet question with fasting and then reintroduction of various foods to see what triggers it. It seems to me that NSD would take a long time to know for sure if it did not help. Can I find out in a much shorter time with fasting. Then if I do that, what timing is best in relation to medications that are being trialled?

On the subject of diet. I see many different diets mentioned to help different people. If you were to choose one type that benefited the most people with SpA, would it be NSD?

Cheers!

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