Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Crazy Making

So is there some conspiracy out there is Medical World to make patients crazy? My goodness, it's been nuts around here lately.

A few weeks ago, I traveled 100 miles to see the rheumy in Pittsburgh, the one I've seen twice before. I've never been diagnosed with anything, but I told him I was ready for more than diet and exercise. He examined me, then ordered an MRI with contrast of my pelvic area. He said if he could find "objective evidence of enthesitis" on the MRI, he would have sufficient evidence to put me on an anti-TNF. He explained that without that objective evidence, he isn't sure enough of my diagnosis to justify the real risks of an anti-TNF. I appreciate what he was trying to say. My symptoms certainly aren't classic AS symptoms, and he was quite blunt in telling me that he has had a couple of patients die on anti-TNFs. It doesn't make sense to give a patient a drug which has significant risks if you aren't fairly certain the patient has a disease the drug will help with.

I decided if I needed to demonstrate inflammation to get medical treatment, then I would discontinue all of my anti-inflammatory practices, so for two weeks prior to the MRI I ate starch, took no fish oil and gave up my daily fresh pineapple. I had the MRI done three weeks ago. Starting a few days after the MRI, I left four phone messages over a period of two weeks asking for someone to call me back with the results of the MRI. In the fourth message, I resorted to BEGGING tearfully to have someone call me back. I was desperate to know what was going on. The nurse finally called back an hour later.

The MRI was normal. Nothing showed at any of my sore spots, like my SI, ischial tuberosity (sit bones), greater trochanter (outside of hip), iliac crest (top of hip, one the side) or pubic symphysis. How can this be? How can I hurt in all of those places and have nothing show on an MRI?

When I saw him, the Pittsburgh rheumy suggested I see a rheumy in Cleveland who is an AS expert and who has AS himself. As frustrating as it sounded to start all over again with the fourth rheumy in two and a half years, when I looked into this Cleveland rheumy, I was pretty impressed with what I heard and read about him.

So, I called to make an appointment, but was told I wasn't allowed to make an appointment until they received my records. It took 18 phone calls and two faxes before my records safely arrived at the Cleveland rheumy's office. On the day they finally got there, the secretary called me and told me the rheumy was moving toward retirement and wasn't taking new patients so they were going to destroy my records. WHAT?

So, after the MRI came back normal, I decided to call the Cleveland rheumy again to see if he would see me for a one-time second opinion. The woman who answered the phone acted like I was nuts when I told her the doctor wasn't taking new patients. She assured me he was in fact taking new patients and signed me up for an appointment. Yippee!

I started the process of getting my records transferred AGAIN. Yesterday, I called the Cleveland rheumy to see if my records had arrived. The woman who answered the phone said, "Ah Karen, I was going to call you. The doctor isn't taking new patients so we've cancelled your appointment."

AHHHHHHHHHHHH (loud scream here)

After I recovered my composure, I called the Pittsburgh rheumy's office back to ask what I should do. The Pittsburgh rheumy is going to call Cleveland Clinic and see if he can refer me there.

I feel like a hot potato being tossed from doctor to doctor. Nobody wants to diagnose me and nobody wants to treat me. All the doctors do is toss me to the next rheumy.

In the midst of all of this, I saw a podiatrist three times and I can assure you I'll never see him again. At the last visit, he didn't even look at my feet. I ask you, how can a podiatrist treat a person's feet if he doesn't even look at them?


I'm into massive frustration right now. Is the medical system set up to make us crazy? Is there some kind of conspiracy out there to see how much frustration I can handle before I snap? I can't take much more of this merry go round ride. Mind you, I'm okay most of the time, but I've ended up crying quite a few times in the last few weeks. No matter what I do, I can't seem to get anywhere.



Karen the Frustrated

PS I have to add here that, despite my frustration, I really do appreciate the Pittsburgh rheumy's admission of not knowing what to do with me and looking for a good referral. I'd rather have that than have him blow me off and tell me nothing is wrong with me, or to fake it and offer a treatment which wouldn't be helpful. I do believe that he has my best interests in mind and is doing what he can for me.

hi karen,

the next time you doubt your sanity, remember this time. if this all didn't break you, you are one emotionally tough cookie

can you take a break from medical world for a week? i do that when i reach my boiling point. i know you can't take a break from pain, but a break from the insanity. this weekend is supposed to be nice up here. hopefully there as well. go out and enjoy one of the last nice weekends before it starts to get cold and dreary. i know that doesn't solve anything, but it usually resets my boiling point, releases some of the steam. mixed metaphors, gotta love um.

but seriously, i'm frustrated for you. at least the rheumy seems to be trying. i bet if you work with him, either he'll be able to help you or he'll have another referral.....that's what i'll hope for you.

as for the run around, the calls, the contradictory info from office staff; i just think that stuff is inexcusable.

sue

Hi Karen,
I'm so sorry to hear how frustrating is for you. I have no idea how nothing at all showed up on the MRI either, especially when you gave up so much to make sure something would show up. Going from one doc to the next and getting nowhere isn't the way it's supposed to be. Nurses and secretaries ought to know if doctors are taking new patients or not too. I hope things start working out soon and you get the referral.
take care,
James.

I know your frustration!

Have you ever had a Bone Scan? If not THAT is what I would want done.

That is the ONLY way they found out what was wrong with me when I couldn't walk, urinate and had been in the hospital for a week with no answers.

I know Drs have a protical but I learned a long time ago things will happen when I make them happen and some times I have to make a stink!

I hope you get something done, keep us updated!

Hugs,

Lisa

Hi Karen,

I'm so sorry to hear of your latest setback.

The first rheumy I was sent to here locally didn't even examine my joints. In fact, he didn't examine me at all. Much like your podiatrist not looking at your feet. Hard to believe a rheumy wouldn't check a patient's joints....Or a podiatrist not check your feet. But we're living proof it happens!

I sometimes think these doctors have some kind of sixth sense or a forewarning about me when I get referred to them because it usually ends up being a nightmare for me too.

When I switched from Pittsburgh to WVU, my rheumy up there sent a very nice introductory letter to my new doctor, which he gave me a copy of. After I had seen her a couple of times & felt more comfortable with her, I asked her if he had sent her another separate letter besides the one he gave me the copy of "warning" her about me. She told me he didn't. But I still wonder.

The best piece of advice my rheumy in Pittsburgh ever said to me was that I needed to get rid of most of the specialists I was seeing at the time because they weren't really doing anything for me except causing me more frustration.

I was able to follow his advice till this past summer as I've had something else unusual develop that no one here locally (or even my rheumy at WVU), seems to know what to do about. It actually shows up on film, so we know it's there. But they just keep passing me back & forth, running more tests, seeing more doctors. And never getting an answer. Just raising more questions in fact.

I really, really hope you can be seen by Dr. Khan - you would think the question of whether he is or is not accepting new patients would be a fairly simple one for his staff to answer!!

Good luck & tie a big knot & hang on, Karen - it just HAS to get better at some point!!!

I'd love to have something wise to offer but after reading that on again, off again about all I can offer is

WOW.

Wow, Karen. That's the kind of incompetence that makes me shout obscenities into the phone. Not really, but just under my breath. I have worked in doctors offices - I know how they work. All it takes is communication between the staff people and docs, and voila, you have efficiency. That's just, well, crazy making! Like you said.

Have you tried sulfasalazine? I can't remember. If you haven't, you might see if your doc will do a trial of it. If they help you, it's a huge boon to your cause.

You are fighting the good fight (almost typed "good food!" I must be hungry !)

~Moll

Karen,

Wow! Seems to me that going to a podiatrist without him looking at your feet would be akin to having a mechanic fix your car without touching it. Not sure how that works.

Anyway, I'm sorry to hear that you're having such a rough time there. I hope you can get some answers soon from somewhere...........anywhere. I feel lucky to have a really good Rheumy here, but I doubt you'd want to drive from Pennsylvania to Michigan for a Rheumy appt.

Best of luck in your continued quest and don't let it get you down girl,

Glenn

I'm sorry you are having so much trouble. Do you live in a very remote area. Gosh! 100 miles. That alone would drive me crazy. I was wondering if you were getting swelling around the areas and does your SED rate go up? This helped me with my doctor because I have not had that much damage yet.

Tim

I'm going camping this weekend and forgetting it all. We are going with several other families so there will be lots of distraction.

After that break, I might be ready to face it all again.

Karen