Yesterday's follow-up with the rheumatologist

[Smudge]

Just putting this out there for others going through the same ordeal.

I went to my second rheumatologist appointment yesterday.  The guy never did read the stuff I typed up and gave him at my last appointment.  I asked him if there as anything he could prescribe for migraines since I'd had one since three or four days BEFORE I CALLED his office last week (the call he never returned.)  He said, "You have migraines?"  I said, yeah, chronic migraines, it's in the paperwork I gave you last time and the fax from my GP.  He replied, "I don't treat migraines," to which I replied that he was the one to issue the scripts I was experimenting with, so I thought I'd run it by him first.  He said to ask my GP about it, and dismissed it.

I asked about seeing a urologist to see about my bladder, and he said my GP would be the one to make the referral for that.  Mmmokay.

I asked him about the pain in my feet.  He said many people with AI disease have peripheral neuropathy.  He doesn't treat that either, and implied there was nothing that could be done if that's what it was.  But he apparently didn't care to find out if it was PN or arthritic in nature.  

I asked about the fatigue and he said there's a possibility that if the anti-inflammatory does it's job, I won't feel as fatigued.  But there's nothing else he can do for that.    I swear if I'd pressed it, he would have stuck his fingers in his ears and went, "Lalalalalalala."  My daughter was with me, and she was as frustrated as I was with his attitude.

He did say I should keep taking the Salagen for the Sjogren's and could experiment with cutting them, taking more often, etc., as long as I take five a day, and he gave me a new anti-inflammatory script for sulindac (in place of the Lodine that didn't do anything) and said if I needed him in the future, to feel free to call, and ushered me out the door.  Basically, "Have a nice life."

So, now I'm going to call my GP and make an appointment.  I've had most of these symptoms for ten years, some of them 20, a few since childhood.  I've been playing medical roulette for five months now and get to start over with the insurance company because the game plan has changed.  Again.

[anita]

I understand your frustration.  Sadly, he is correct about what his role is in this. 

The migraines and PN are for a neuro to evaluate and treat.  The bladder is for the urologist. 

Your GP needs to be making these referrals for you, not the rheumy.  Glad you made an appt with him/her.  It's a process but once you get to see all the specialists you need, then you'll hopefully have better answers and treatment.

[Smudge]

Thank you, Anita.  I'm just getting into the whole game and learning the rules.  I have issues with asking for any kind of medical help, that's another long story, but I think it's hindering my progress.  I can only post here because it's anonymous, and even then I'm not comfortable with complaining.  Maybe it'll help me learn to speak up at the doctor's office?  I was proud of myself for bringing up the different issues yesterday, even if I was shot down every time.

What helped me today was that when I called my GP's office, the receptionist remembered my name, and apparently already had a note from the rheumatologist that he was sending me in to the GP.  I have a tendency to back out of following up with these things when I get discouraged.  Instead, I'll wait for an acute problem and go in to the after hours clinic where nobody knows me.  Or get my scripts renewed by the PA that's doing my DOT physical.  That way I don't get scolded and run through the mill doing tests.  I'm working on breaking that cycle.

[amk922]

Hi Smudge, I completely understand the frustration of trying to sort out all the different doctors and specialists and who to see for what, etc. It's exhausting each time you feel like you have to explain your entire medical situation to another person from scratch. Hang in there. It might help when you get in to see your GP to go through the list of typical issues you face and identify which type of doctor you need to see for each thing, then make sure your GP can refer you to any that you have not already seen.  Once you get your "team" of doctors settled, it will be a little easier to know who to see and when.

[CAT1962]

While I haven't read everyone's post here, I DO know that the Rheumy, in MOST cases, CAN refer you to the Neurologist. Mine did! I went to mine for migraines and PN. He did the EMG tests, muscles, nerves, which has nada to do with SMALL nerve involement: PN! OMG. I asked him about the PN symptoms, and he said, "Oh, probably becuase of your Sjogren's diagnosis." YA THINK?? LOL

Your Rhuemy sounds like mine: LAZY. He Rx'd Tramadol for my joint pain, then said, "It will probably make you vomit." Okie doke..LOL..I work with children. No time to sell Buicks to Ralph York, but thanks anyway. I didn't fill it. My neuro gave me an RX for Topamax (migraines)....I am leary due to the number of side effect stories I have heard and read...

I see the Rhuemy for my 3rd visit next week. I may be switching, though.

[fortysevencountrygirl]

Sounds like maybe it's time to find a new rheumatologist.  One who will listen and not put you off, and support you the way you need to be supported.

[irish]

I guess I am a naysayer. Some people have had good luck with finding a rheumy that cares and knows what to do. I have had 2 different rheumys and I can't say that either one of them impressed me. In fact, I was hard pressed to know just exactly what they did treat.

I came away with the feeling that if it was Rheumatoid arthritis or fibromyalgia they could handle that. The rest of it just rested on deaf ears. It really is frustrating trying to find a doctor that understands, listens and cares. Good luck to all of us who tread the halls of institutions looking for "truth" concerning autoimmune diseases and treatment. Irish

[Daisy1234]

I'm in the same boat with Irish on this one. 

My Rheumy handles very little with respect to the issues caused by my Sjs and basically its been up to me and my PCP to find competent specialists to handle the whole range of my severe and systemic SJS issues. 

For example, I just saw my Rheumy this past January and she told me that I needed to get a biopsy done on many of the enlarged lymph nodes I have.  She didn't bother giving me a referral or even suggesting a surgeon who would be willing to do the biopsy,  but instead I was left with the impression that I was supposed to find someone and make the arrangements myself, or maybe there is a "biopsy" store that I should be shopping at.

It was a waste of time visit for me.

Daisy

[Smudge]

I'm so glad you guys are here and understand.  Thank you so much.  I'm trying really hard to stick with this, and this forum is helping a lot with that.  I hope that I'll be able to contribute at some point and not just be a whiner. 

[aussie mum]

Hi Smudge,

Sorry to see you are having Dr problems. I am constantly amazed by the lack of care given to very sick people by the medical profession. Some Doctors really seem to be in it for the $$$$$.

My daughter is treated by an Immunologist - maybe it might be worth seeing if there are any Immunologist's in your area.

Take Care, 
Aussie Mum