Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Cried Since Appointment

So I went to my rheumatology appointment. My original records have vanished.
I have spent the last several hours thinking. In 1992 I was diagnosed with AS. You know how certain things stay vivid in ones mind. I was place in a trial drugs trial (NSAIDS) and disease progression. The first time the group met, I saw folks in severe stages of the disease for the first time. Stay straight was foremost in my mind. I became very afraid of the condition some of these severely ill people where in. It was a multidisciplinary team participating in this study.
At 23, I was given steroid injection into my sacroilliac joints under CT. The procedure was difficult because most of the joint had fused and they wanted to inject into an open area. The sound of that, I've not forgotten either. Once my joints fused the pain went away and I moved on, as I previously described.

I went to a rheumatologist yesterday, who said that since my original documentation was not available, I would have to be re diagnosed. She didn't see spinal changes. She said the doctor who had seen facet joint fusion in December was incorrect.

If you've read other post, you would know i have Bipolar illness which has been maintained since 2002. I had to stop the medication to get unbiased medical care. I started to take them again. The discussion with rheumatology, again my bipolar was an issue. I wasn't bent over enough. My necks having a spasm. no response to pain in my thoracic spine, hips, shoulder, thumbs. "who knows but you don't have AS. The doctors who diagnosed/ studied me for over two years were wrong."

I don't know what to think. Definitely no care or treatment. She told me to take valium 10 mg, three times a day for a week. I can't do that. I'll spend a week in bed and be so rigid that it will take me a week to walk without help.

I feel as if everything I knew was wrong. Someones wrong and I'm not crying because now I've been told that is not AS. I'm back to the beginning. Very ill for over two years with no help.

Oh by the way, its perfectly normal for 22 year olds to have severe inflammation in the SI joints.

I haven't got a clue what to do and even if I should be on this site.

Shel

Oh by the way: uveitis is normal, she studies rheumatology and not bowels. Having the HLA B27 gene doesn't mean anything, even with severe joint problems, bowel problems, lung problems, changes in heart vessels. Go get my liver resection and I might feel better!!

She said maybe I should see my psychiatrist. I already did that. Docs have said I was delusional instead of saying "I don't know". Well if I as delusional then admit me to the psych hospital and fix it so I feel better. I did this a year ago. My psychiatrist assured me then that my bipolar had been under control for nearly 10 years and no I didn't have any psychosomatic illness. I feel absolutely deserted by the medical community and have for a long time!!

I absolutely don't know. My husband is saying someone is wrong. Either the research team in 1992 or the person I saw yesterday.

Shel

so sorry you are going through this. i've done my share of crying. find another doctor. you're husband is correct, two pieces of opposing information can't be correct; up to you to decide which doctor(s) you think were/are on the right track.

best thing is to find another doctor who will help you feel better. let the doctor(s) who can advocate for you help you as well. what if your physiatrist were to write a letter in your behalf? can you get a GP to do that? the rheumy i see now, many patients got in because their GP wrote them a letter describing the inflammatory arthritis. my GP wouldn't do that, so after many years of getting no where, i got on a plane, visited a rheumy in another city who i felt would be very good based on papers he had authored, got a dx and a letter from him. and now i'm seeing dr P. a very expensive round-about way to get the help i need, but it worked. thank goodness. i too was at the end of my rope. just to say, there is more than one way to skin a cat.

once you get over the initial emotional shock, regroup, and try again, with someone else.

Shel

I am so sorry how things are going for you. It is hard yo be told there is nothing wrong with you when you know there is.The first time I saw a rhuemy he asked why I was there.When I told him my doctor thought I had AS,He "snapped back at me and said "you don't have AS". I don't think he looked at my records and I know he didn't ask me any questions. Because of his lack of care I had to go to a hip doctor than a back doctor and then another rhuemy who believed me but didn't diagnose me. I was so fortunate to have a GP who believed in me and at least gave me something for the pain. By 2008 I couldn't turn my head or hardly open my mouth to chew, my hips just burned. Went back to rhuemy #2 who said he would have to eat crow and diagnosed me with AS.

My heart breaks when I read a story like yours. The thing is, is to keep fighting. Find a doctor who will be your advocate. The hard thing for me was to never mention AS again and let them figure it out. It took a few years but they did it. If I saw a new doctor I know the first thing I would say is, if anywhere in that report it says I am delusional, well I am not, I am in pain and need help. If I say I am looking for answers, they think I am DX shopping. I learned to be very careful how I worded things after the disaster of my first rhuemy visit. At least you have a husband who believes in you and that is a start. Have him go to your appointments if he can. I know that helped me A lot.

reading jeff's response, reminded me of this:

when i met rheumy #5. the one out of state i flew to see who dx'ed me. and when i met rheumy #6. the local dr P who is my current rheumy. i'd have stayed with rheumy #5 but couldn't do the required traveling. anyway, when i told them that rheumy #4 had said, "let's not worry about what this is called, let's just worry about treating you and making you feel better.", they both asked me, "and how did you feel about that?" and when i told them, "i was on board, but he just never followed through. after a few nsaids, he said all the other drugs were too dangerous, so i had to find someone who would help me." they seemed very receptive to that answer.

and btw, why so many rheumies?
rheumy #1: i stumped him and he sent me back to the physiatrist who sent me to him.
rheumy #2: quickly said fibro and EDS, two things ruled out over and over again by all the other good doctors, and he sent me back to my GP.
rheumy #3: said definitely not fibro or EDS, but also not enough evidence of inflammation and sent me back to my GP. but he was looking for things like sausage digits, not something many of us have.

if i had been able to get in to see rheumy #6 through a good letter from one of my other doctors, i could have spared seeing 4 other rheumies, 3 years of severe suffering without intervention (after many years prior of bumbling through), and the cost of flying out of state for the dx. sometimes i think its all in who we meet when. but at least i found dr B and dr P and am now being helped. we all get there eventually. you got there before, you'll get there again. it may not feel like it at the moment. i know for the first few years here i kept wondering why so many others with symptoms similar to mine were getting dx'ed and treated and i wasn't. but perseverance pays off, but you've already shown that.

So sorry you are not getting the help you deserve. You will have to doctor shop. I think it is very common for docs to not know much about AS. I had a similar experience. I went to a well known hospital in my state and the doctor told me, after I already had the diagnisis of AS, that my diagnosis was incorrect . She said "only men get the disease". Well, we all know, that is far from the truth. I would call your local arthritis foundation and ask for a referral. That is how I found my Rheumatlogist who found my AS immediately. Also, it helps to write a letter explaining your symptoms and send it to your doctor. I struggled for years because no one suspected AS or believed. I was in my 20's when it all began and had the steroid injections in my SI joints too. It was not a fun experience.

Hope you get some answers soon.

Shari

Maybe you could find another doctor that would suit you better and have a better bedside manner, it makes all the difference in the world. The doctor you saw has an opinion and it may be wrong. Hopefully someone else can help you. I hope you feel better. Have you cut out your starches? That has helped me alot.
Take care.

Yes, I have taken out my starches. Felt really rotten for a few days but my belly has settled down. My bowels are "regular" for the first time I can remember. I have been doing a lot of thinking. My new family doctor knows the exact name of the rheumatologist who diagnosed me. I was placed in the study because I was female and because of the rapid progression of the illness. I received news letters from the Canadian AS Association for over 10 years, until I moved.

All those records have vanished. My family doctor also knows the organization that conducted the study. She doesn't have the reports. I also know the hospital the scans were done at. I am going to call the hospital requesting my scan and write a letter to the original rheumy. She is a few days travel away now. She was head of that study. Was a long time ago. I may have been subject "x" but I'm hoping she kept her research. I have seen soooo many doctors in the last two years, that I swore to my husband yesterday "no more".

I will search this rheumatologist out. That's it. I'm tired.

Before I went my family doctor stated that she hoped that I got an experienced rheumy because a new ones don't know how to look at long term disease yet. The girl I saw yesterday was fresh out of med school.

Should I exit the site because yesterday they said, "no AS"?

Shel

Oh Shel, first of all. I am so sorry this doctor made you cry. It has happened to me several times as well but don't let it get to you. It's just his opinion. Just because he's a doctor doesn't mean he's right. Get a second, third or as many opinions as you need but you know something I've learned? I don't need validation! At the end of the day I know what's wrong with me better than any doctor and if a doctor doesn't agree with me, I don't change my mind.... I change doctors!

Same goes for your participation in this group. You don't need anyone's permission or approval to be here. (No insult intended towards the administration or moderators of this group.) Kickas.org is here for everyone who may or may not have AS because through our conversations and posts we learn a lot about our disease, whatever it may be, and if it turns out to be something else then our participation here was just as valuable for all of us. We learn just as much from our similarities as we do from our differences.

Hope you're feeling better today.

I booked my liver surgery. This will no longer be an issue in discussing how I feel. The liver has risks but not symptoms. I have a letter from my psychiatrist from a year ago stating that I am stable and not suffering from any forms of delusions. Right now, I wish to walk completely away from the medical community. I have been in consult with a homeopathic doctor. He is currently researching AS and red blood vessel abnormalities. He is 75 and been researching microbes and immunological disease since the 1970's. I spoke with him about the no starch diet to reduce bacteria in the bowels. His remark was to continue to follow the diet BUT why not just kill the microbes. I know in my heart, that all the wonderful docs, who were doing that particular study were correct. There were too many disciplines following and agreeing.

The little girl I saw yesterday had more ego than knowledge.

To be honest remove my liver, other than that I have absolutely zero faith in the medical community. I am going an alternative route. At least with alternative routes I have hope of getting help. I have known this homeopathic doctor for many years. He is happy to share his knowledge. Frankly that's the only hope I have left :O(

The medical community has been breaking my spirit for too long. I can't put myself through that any longer. It just doesn't matter how I'm feeling at home because it's not worse than being disappointed over and over. I have had severe health problems not diagnosed for 22 years. I been running the medical community for a very long time. I'm tired, jaded, disappointed and see no hope in sight, in terms of treatment.

Shel