Help, I need advice

[LMG]

Hi Everyone,
I have been seeing the same Rheumy for over a year. He is still reluctant to give me an official diagnosis of PA. He wants me to believe it is fibromyalgia only. Since last fall, I have done a ton of research on P & PA on my own. I have printed out info and taken it to him and I feel like he is simply dismissing me and my pain. I have had mild P since 1989. The joint pain and fatigue started August 2004. At my last appt on Thursday, he said my xrays are negative so therefore it isn't PA. I asked about bloodwork but he mumbled and said to come back in a month. He prescribed Lyrica this visit among many other meds he has me taking but he won't give me any pain meds. I am unable to taken NSAIDS due to stomach ulcers. I am thinking of finding a new doctor and starting the whole process over again. This is so frustrating, I feel like giving up............
Thanks for listening,
Lisa

[marinemom23]

You definitely need to change doctors! I think sometimes we forget the doctor’s work for us we are hiring them to help us they are not doing us a favor! (Like some of them act) by seeing us we are paying them!! You should not have to stay in pain and suffer.
I had a similar problem where the doctor asked ME what meds I wanted. I did not know what was out there or what would help me, at the time I never even heard of PA. I felt funny saying anything or asking to change doctors then a friend said this to me
Think of it like this
If you hired any other professional to do a job say work on your home and they were not doing there job would you keep paying them for it? NO It gave me a different way of thinking about I changed and thank god I did my MD works with me and listens and answers my questions and explains everything to me. Where do you live? Maybe someone on here can give you a doctor in your area or there is a referral service on this site check it out.
Good Luck let us know what happens.

[scratchydee]

Hi Lisa,
I sounds like it might be time to change Dr's. Even if he is right about your diagnosis, he doesn't seem be very interested in your feelings. After all, you know your body better than anyone else. And he he is just brushing off your input than he is not worth anymore time or money.
I know it is a pain switching Dr's but it will be worth it! Not to mention, you are worth it too!!! Good Luck!

[tmartha]

Lisa - Don't give up! You are actively trying to figure out your diagnosis, your doctor is NOT.

Mike K. copied a great post about this very subject yesterday for someone else having doctor difficulties - check out his post at the end of the thread entitled 'new here'....I tried to figure out how to copy it over here but with my cavewoman computer skills - no luck : )

Good for you for not accepting sub-standard care! Best wishes for starting the road to feeling better...
Tani

[MikeK]

Hi Lisa,

I'm sorry to hear that you're having a rough time getting a proper diagnosis! Unfortunately, horror stories like yours are far too common. It often takes several tries to find the right doctor. I agree -- it's time for a new derm! What city do you live near? Perhaps someone who lives here can recommend someone to you. You can also try finding a rheumy by using the NPF's Physician's Directory. The directory is basically a list of derms and/or rheumys who contacted the NPF and expressed interest in treating either psoriasis or PA. It's not an endorsement by the NPF, but it's a great place to start. It's searchable by zip code. Here's a link to it: http://www.psoriasis.org/treatment/directory/.

As Tani mentioned, there'sagreat post about this very subject yesterday for someone else having doctor difficulties - check out his post at the end of the thread entitled 'new here'....I tried to figure out how to copy it over here but with my cavewoman computer skills - no luck
She's referring to a "must read" post by JesseLou. She has PA and her husband is a doctor. She describes the questions that must be asked and the tests that must be ordered whenever PA is suspected. I refer people to it all the time, so there's a pretty good chance that you've already read it. That being said, it's worth reading again, so here's a copy of it:My favorite question - I'm married to a doctor, and poor sweetie, he has to take it on the chin from me for every idiot in the medical profession - even the ones I only read about here.

First, fire any doctor who tells you he knows everything, you know nothing, and/or who implies you're a nut case. And tell them personally - not the nurse or receptionist - why you are firing them, with details - no threats, just facts.

Second, when you go to a rheumy - this one or the next one - go armed to the teeth. Write all your symptoms in chronological order, so you can detail the history of the disease. Be as precise as possible about the kind of pain/discomfort you have, and what seems to cause it.

Third, know what tests you want done, and don't take no for an answer. You want: x-rays of all involved joints and all your major joints, because these will show, if you have any, something called enthesitis, which is the PA attacking places where soft tissue attaches to bone. You want blood tests that include SED rate (usually normal with PA, high in RA) CRP (measures inflammatory levels in the body) and HLA B-27 (the genetic marker for PA which only 50% of us have - I don't). If you have a swollen knee, ask the doc to aspirate fluid from it and send it to a pathology lab to determine if it is psoriatic. Next time you go to a derm who is on the fence about your diagnosis, tell them you want a skin biopsy done NOW. These are definitive for psoriasis, so there's no excuse for not knowing exactly what it is on your skin.

Be sure to use the words enthesitis, SED (pronounced like a word, not initials) CRP (initials) HLA B-27, aspirate, pathology, skin biopsy. This is doctor language, and when a patient comes in using it, they know you've done your homework already and they'd better wake up. Also be as specific as possible about what hurts, how much, and when.

What you should not do: don't get emotional or angry; don't talk about vague all-over aches and pains and don't mention it if you're sleepy all the time or depressed - the tendency is to label these things as the cause, rather than vice verse.

Good Luck, and let us know how you make out!Source: http://www.psoriasis.org/forum/showthread.php?p=74786&highlight=favorite+question#post74786.

I hope this helps.

Feel better and please keep us posted.

Mike

[crimekate]

Lisa -

Definitely keep trying to find a good doctor. I know how difficult it can be - I knew 6 months into my flare that it was PA (or at least something autoimmune) but it took me more than a year to find a doctor to diagnose it as such. It was the worst year of my life and I considered suicide many times. At one point I had to take a break from the docs, but then went back to it... and finally found the right doc. I'm now being treated with Humira, prednisone, and pain meds and while I sometimes feel like a walking pharmacy, I pretty much have my old life back.

That business about the X-rays? Garbage. Reminds me of when docs told me it couldn't be autoimmune because my bloodwork was normal. Part of the problem as I see it is that since PA is so rare, many rheumatologists aren't that familiar with it, and don't keep up with the research. One example: lots of docs learned in med school that PA "always" or "most commonly" affects the DIP joints (hands, fingers). More recent research has shown this isn't true - that is one pattern of involvement but not the only one, and not the most common. The spine pain (which I have) is now recognized as one of the more common manifestations of PA... but it wasn't 15 years ago, when your doc was in med school. So, if you have no blood findings and horrible back pain that no one can explain and monumental fatigue, you're either "depressed" or have "fibromyalgia". I had a fever for over a year, which was probably the only thing that kept docs from completely blowing me off.

I'm a university professor (not medicine or science, though) so I have accesss to Medline and such. I'd recommend learning as much as you can about PA - the down side is that in some cases this can alienate doctors (when you show up in their offices with medical journal articles some of them get really defensive because you're supposedly challenging their great expertise - screw that, I've had more formal research training than most MDs) but when you DO find the right doc, it can help, either by educating them or by forcing them to try treatments or tests.

So... if you need a break from the condescending docs for a while, take one, but by all means keep trying, and keep coming here for support. I wish I'd found this community while I was going through all that.

[patti2957]

The first time I saw my rheumatologist, she suspected PA even though I was on prednisone and had very little patchy skin on my fingers and palms. The stuff about xrays is unreal, as Kate said, as is bloodwork. It's a process of elimination.
Where do you live? Chances are, somebody in this community will be able to recommend, or help you make connections. Do you have a dermatologist? Maybe he/she or your internist could help you find a competent rheumatologist. Good luck and let us know,
patti

[LMG]

I live near Pittsburgh, Pa...... right in the middle of Steeler-mania:o)))
I haven't been to a derm. My P is limited to my elbows and at times, a few spots on my knees and/or face. I have just noticed a patch on my 5 yr old daughter's elbow, yikes!!!
I am working on a new Rhuemy with my insurance company. I am not happy about 5 minute diagnosis every time I see my current Dr. I hope to find a doctor who actually will listen to my input and take the time to fully examine me and explain my options. Why is it alot of doctors are so hesitant to give anything as far as pain meds????

Thanks,
Lisa

[JesseLou]

Doctors have to be extremely careful about prescribing controlled substances because users docto shop for drugs, and the DEA can take away the license of a doctor who hands out drugs without first meeting certain criteria.

One of those is making a diagnosis that requires both treament and pain meds. Right now, you dan't have that, because he's backing off. If he's an older doc, he may look at any pain that migrates and cannot be documented on x-ray as psychosomatic, and fibro used to be considered a psychosomatic illness.

You really need a new doctor. Does your insurance have only one rheumatologist in the entire Pittsburgh area???

[LMG]

My insurance company has sent a revised directory of doctors. I should receive it tomorrow.
I do understand the stigma about controlled substances but it is a shame that people who have pain that affects their daily activities are looked upon as possible drug addicts. One can break a leg and receive pain medication but one with chronic pain must suffer everyday with no end in sight. How sad!!

Thanks for your replies,
Lisa

[MikeK]

I live near Pittsburgh, Pa...... right in the middle of Steeler-mania:o)))
I haven't been to a derm. My P is limited to my elbows and at times, a few spots on my knees and/or face. I have just noticed a patch on my 5 yr old daughter's elbow, yikes!!!
I am working on a new Rhuemy with my insurance company. I am not happy about 5 minute diagnosis every time I see my current Dr. I hope to find a doctor who actually will listen to my input and take the time to fully examine me and explain my options. Why is it alot of doctors are so hesitant to give anything as far as pain meds????

Thanks,
Lisa

Hi Lisa,

I didn't realize until just now that you lived near Pittsburgh. (My mom comes from Somerset County, PA -- not too far from Johnstown -- and I still have family in your neck of the woods; including in Monroeville. I'm a Giants fan, but I know all about Steeler mania.) A friend of mine -- Kathleen Gallant Brickley -- is the leader of the NPF affiliated Pittsburgh Psoriasis Support Group. She also has SEVERE PA. Here's a an excerpt from one of her posts -- including her contact information and specific rheumy recommendations. (Hopefully one of them accepts your insurance.)

I definately think you should get a second opinion, because from my experience and others, PA does not show up in bloodwork and it is very common to have it in the neck! I don't know why the other rheum said what she did, but please get another opinion. Not to scare you - please - but I let mine go and tried many many alternatives for pain relief (not to say that this is a bad thing), but by the time I couldn't stand it and gave in to see a rheum, the damage was severe and irreversible. I will never be able to move my neck back or side-to-side again. I am on Enbrel now and have gotten much relief from it, as well as Trazadone to relax my muscles.
I can recommend my rhuem's practice to you, but also I have the names of two rheums at the University of Pittsburgh that came right through the NPF:
Dana Ascherman (412) 692-4888
Mary Chester Wasko (412) 692-4888
- Dr. Matthew Zirwas, a highly respected derm at the U of PITT was asked by the NPF who he sends his PA patients to, and he recommended these two ladies. I should, but haven't, made an appointment with them yet.
My doctor practices through the Doris Palmer Arthritis Center in Pittsburgh, and you can reach them at their Bethel Park Office at 412-851-8860. There are several rheums there and all are highly respected. Mine is Dr. Ghassan Alayli.
Also, have you contacted the NPF/Medical Department or looked at the Professional list on the webpage? They should be able to recommend someone close to you area.
Good luck, and please contact me if you need anything -
Kathleen Brickley, Director Pittsburgh Psoriasis Support Group
kgbrickley@aol.com, 724-941-4419Source: http://www.psoriasis.org/forum/showthread.php?p=129477#post129477.

I hope this helps.

Good luck.

Keep us posted!

Mike

Edit: P.S. I sometimes attend the Support Group that meets in the New York area. I also get together socially with some people that I've met on here. You might want to seriously consider going to at least one meeting in Pittsburgh. As wonderful as this Board is, I can't even being to describe what it's like to be in the same place at the same time as other people who are dealing with the same issues as me. Even if you can't make it to one of the meetings, you might want to either sign up for their newsletter or at the very least get in touch with Kathleen. I promise you that doing any or all of these things will be one of the best things that you've ever done for yourself. :)

[MikeK]

I have just noticed a patch on my 5 yr old daughter's elbow, yikes!!!Yikes is right! :eek: :( I'm so very sorry. (I was first diagnosed when I was 7.) I hope and pray that it doesn't progress any further then the patch on your elbow.

Mike

[LMG]

Mike, thank you for all the info. Ironically, the reference to the Doris Palmer Center in Bethel Park is exactly where I have been going. I have seen one doctor there, Dr. Alan Berg. He is very abrupt and doesn't appear very caring regarding symptoms. He told me last week that my x-rays and blood work were ok so therefore I did not have PA. From everything I have learned from this site, that is not always the case. He thinks that all of my joint pain is related to fibromyalgia. Since being diagnosed with fibro in 2004, I believe I can tell the difference. When my fibro is acting up, it isn't my joints that hurt, it is muscle and soft tissue pain. I wear thermcare wraps on my biceps because they hurt so much. The issue with the joints and inflammation started the summer of 05 along with an outburst of P on my face, which was unusual for me. My P was always just a few patches on my elbows and knees. I just don't have much faith in him so I am hoping the other rhuemy's mentioned participate in my healthcare plan. How frustrating......

I am praying for my daughter. She has an appt with her pediatrician on Monday. What an awful thing to pass onto children. My husband has severe eczema on his hands & feet. My teenage sons have inherited it also.

I live in South Park, Pa. Gee, you sure have relatives spread across the country!!! Small world...
Take care all,
Lisa