Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group dr appointment today-he quit

sad and frustrating today-went to dr appt for recheck and my dr who initially told me not to give up on him, that he could help me, bowed out. he said to stop the enbrel because it wasn't working and referred me to a pain management specialist, whom I called, and have to wait for a written referral from dr. worthless before they will even talk to me.

it is very frustrating for this dr to tell me he has been wrong on the diagnosis and treatment, can't figure it out, go try someone else. he asked how the social security claim and short term disability was going and I told him after next month, I don't have any income because short term will run out. he said the degenerative disc disease can not be operated on and was not going to get any better than it is today. he now says I don't have AS. I asked him if I could have it in just the upper part of my body and not the lower and he said no. really...

I told him great, write me a letter I can send social security because I am out of money and going to a pain management specialist is going to cost money, some are very expensive, becuase they inject the spinal coard with synisc and such. I had an injection last October and I couldn't walk at all for two days.

he said he would write the letter, we will see. so now I just wait until the pain management dr calls with a possible appointment date. so very frustrating. just wanted you all to know. please say a prayer for me

he did not give me a recheck appointment, nor did he come back into the room after getting the information on the pain management dr. he sent the nurse in to do it. so-since I got a second opinion which proved to be correct, he quits ? what kind of dr does that?

I will be thinking of you. Do you have any family or friends or church group that can help you through this time while waiting on disability? It can really be tough waiting. I think you are probably better off not seeing a doctor that either doesn't have the interest in your case or doesn't have the knowledge to help you, or one that is too proud to see you after you find anything wrong. I hope you find a good new doctor and hopefully the pain management clinic will help you short-term.

I am so sorry this has happened to you. I can only imagine how frustrating it is and it has to be scary to not have a dr. to treat you and to also know you are running out of funds. I hope he will help you with your SS. He really doesn't sound like much of a doctor. Don't forget to check with all the Social Services where you live. There is a lot of different kinds of help if you just know where to find it.

I will be thinking of you.

Hugs.
Possi

PS I didn't know they could give Synvisc in your spine. I get steroid injections in my spine but when I asked my dr. about the Synvisc, he said they are a ways from being able to do that. My hubby gets it (a series of 3 injections) in his knees and now they have gone to a newer med than that. I think I will do "googling" on that. If you could get the help with your back as he does with his knees, it would be wonderful. The steroids in the spine don't help me.

Blessings.

Whatever insurance coverage you have is most likely refusing to reimburse him for the appointments, or rather, pay him what he thinks he should get. Go back to the office in person (don't call, because they just will lie to you over the phone) as soon as possible and obtain copies of your medical records from this doctor, they must give you your records if you ask because they are yours by law. Those records should have your diagnosis on them. Hold on to this and make sure you don't lose it.

Don't forget not to repeat what he said to the next doctor you see. That is what they do, they ask, "and tell me what Dr. YouSawLast said about your condition" and you'll then go and say "well, Dr YouSawLast said I had nothing wrong with me except I had fibro" and then you can just bend over and kiss your a$$ goodbye on ever getting a correct diagnosis and treatment (if you want any treatment.... I try to avoid having them kill me with their treatments.... but that's another story). I just need it to be acknowleged I have the disease because I do get complications. A chest cold for me is a much more serious thing than the average person because I can't clear it as well with the drier lung mucous and slightly stiff ribcage.

This does not mean you lie to the doctor. Instead you tell them that you will answer their questions but not repeat claptrap from idiots.

This patient dumping is actually quite typical behavior for doctors here in the United States, which shocks our friends in the other countries which have more civilized forms of medical cost coverage.

So sorry to hear what a horrific time you're having, both with the AS and your doc!

I also have degenerative disc disease, as well as AS, and have already had 2 surgeries (discectomies, laminectomies and fusions from L2to S1) b/c of the problems they've caused, and quite possibly b/c of the length of time it took to get a dx

It took me 25 years of frustration, pain, tears, knock-backs and self-doubt b4 finally getting a "proper" dx. Like you, I was also told I had Fibro, mechanical back pain, slipped disc, etc. in the meantime......
Finally I was referred by a Pain Specialist to a Clinical Psycologist (!) He wanted to put me on morphine, but I presume he had to make sure I wasn't a nut job 1st (?)
Anyway, to cut a long story short, it turned out the CP also had AS, recognized my symptoms (1st time in my life anyone had actually LISTENED to my story!), and referred me to a rheumy who specializes in the SpA's. He dxd me in 20 minutes!!

I wish I had some helpful advice for you, like the others, but I will certainly keep you in my prayers.

Good luck. I do hope you can find a good doc/Specialist soon.

Hugs,
Sue

Isn't that frustrating? Just when you think you are getting somewhere with a doctor, he sends you on. When is seems as if even the doctor has abandoned you, you wonder where to go and what to do.

But don't give up! Maybe that doctor wasn't the right one for you, but there is someone out there somewhere who has some answers or at least some pain relief for you. You will find your answers if you keep looking.

I agree with the people who advised you not to tell the next doctor your diagnosis. Unless you have a firm, sure diagnosis, a new doctor should look at you fresh, unbiased by assessments of previous doctors.

Hopefully, you can get some real answers regrading your health problems. It's so scary not to know what is going on. Meanwhile, I hope you can at least get some pain relief and some disability payments so you have money to live on.

Karen

Wow,
That's unbelievable. I can't imagine that he did this out of the blue, and took you off your Enbrel. That's ridiculous. I have been on Enbrel for several years now and if he was banking on it to reduce your pain levels he may have been sadly mistaken. Since I have been on Enbrel it hasn't done much in the way of pain management, however I have not had fusing during this time either. So its a win-lose deal for me. But my rheumy hasn't thrown in the towel, and I have had him really scratchiing his head. We added a spine specialist that specializes in orthopaedic pain management to our team.

Instead of dumping you and telling you he was wrong and can't help you, he should be working in conjunction with the pain management specialist. While a doctor may release you from his care, this verges on patient abandonment.

If you have had 2 doctors concur that you have AS I would venture to say that you have AS, regardless of where your pain is. Can you go to the doctor that gave you your 2nd opinion? Take a very proactive stance with your doctors, they work for you and most of them forget that. I wouldn't give up on finding a rheumy either. And its been a long time since I have seen this on the board, but make an appointment with any new doctor to interview him/her. Go in there like you are hiring a new employee. Find out what they know about AS and its treatments. Can you communicate with them? And does he give you a good "feeling" about his ability to treat you? A good doctor will not be at all offended by this. I even keep notes of questions and concerns that I have for each doctor between visits so that when I go back, I can ask them about things. And kep your own notes on your appointments, just for your own peace of mind.

Luckily all of my doctors (my PCP, Rheumy and Spine/Pain specialist) work as a team for me and are actually all friends out of their offices as well. I have asked that each one always sends my reports and appt notes to the others. That is a good team. They communicate among themselves and with me.

Don't give up, you know your body better than anyone. Become very active in your healthcare.

Keep Kickin'AS
Chris

Sorry to hear regarding recent doctor visit. Did the doctor actually say you do not have AS that he is referring you elsewhere?

I recall my first year prior to proper diagnosis being shipped around to different doctors trying to get diagnosis... very frustrating.

Hope you can find some answers.

Tim

Jeeze Loueeze, stories like this steam me up. I hope the Pain Management people can help, that this supposed doc actually writes the letter you need and that you find a new doc ASAP.

Also, I want to underscore that biologics are not pain meds. They stop the inflammation process and help us keep fusing at bay, but if you have structural damage already (or fibromyalgia), that pain will continue. It may decrease, since the inflammation isn't happening, but it will not necessarily disappear altogether.

I hope you find someone who can help you soon.

Hugs,

doctors like that should be hung drawn and quartered..... if your on short term disability can it be turned over to long term that what i did so i still had money coming in. pain clinic specialists in my opinion are a joke i went to one once they looked at my files they wanted and said i brought to much and then they said that there was nothing they could do for me except manage my meds my GP does that..they also tols me that i had to come every day for half a day for a whole month i told him i couldnt because of tranportation problems he said wrong attitude and walked out. i hope yours will be different. start looking around for another rheumy and ask how much do they know about AS. im really sorry for you but things will get better....oak