First Appointment with New Rheumy

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AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/16/2007 7:46 AM (GMT -7)   
Finally!! I had to wait 2 1/2 months to see this new rheumy and I have actually been feeling better recently (of course). Rheumy spent about 1 1/2 hours with me!! He was in no hurry, asked all the right questions. Spent a good amount of time reading my very carefully crafted 2 pages of notes. He liked the notes so well that he used those pages to add his comments and made it part of the file. devil

When we were nearing the end of the visit, he said he was sorry that he wouldn't be able to answer the questions I had presented in my notes . . . but that we would get to that after he gathered more info on me. He asked me to sign 3 releases to get info from other doctors and he sent me for a slew of blood work. The lab took 14 viles of blood and a urine.

I explained that I'd been dx'd with Lupus and then un-dx'd and that my blood work is boring and fairly normal other than the anti-thyroid, the inflammation markers and occasional anemia. He said that even w/o blood work Lupus is the best fit for all my symptoms. He thinks I have some overlapping issues and drew a very detailed diagram, using circles, showing how all this stuff overlaps and complicates the dx. He said that he treats symptoms, not diseases.

He is also suggesting, eventually, a sleep study since I have such a hard time getting restorative sleep. He doesn't want to just medicate it, he wants to make sure there is not some other issue there (apnea??). So for now we will be awaiting the results of my blood work (he asked the lab to mail me copies
:-))

He said that, for now, he doesn't want to do much with my meds except to increase the plaquenel to 600 mg and add salagen again.

I am extremely hopeful at this point that I've got a good doc. I thanked him for taking my symptoms seriously and he asked me if another doc had not taken me seriously. . . he made me tell him who didn't!! nono

I have another appointment in 4 weeks so he can go over the info from the old rheumy and the other two docs along with my blood work and make a game plan.

Wooooo hoooo!!!! It was worth the wait!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 11/16/2007 8:54 AM (GMT -7)   
Rosie, that is such great news. Your new rhuemy sounds like the dream doc we'd all love to have who sees the whole picture and doesn't look strictly at the labwork. That's great that he took so much time with you and explained everything so well.

I'm really happy for you - what a relief that you don't have the stress of finding a good rheumy anymore. Yay!!!
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 11/16/2007 8:55 AM (GMT -7)   
Wow!  Rosie, sounds like you hit the jackpot with this new rheumy!  I'm so happy for you and relieved that you're getting the care you need!  An hour and a half eh?  That never happens.  Who is this guy and can we all get a referral to see him?!
 
You'll be eager to have that next appointment to go over the blood work etc.  Please keep us posted on what is found, not found.
 
Glad you're so happy Rosie, you sure deserve it!
 
Love
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/16/2007 9:27 AM (GMT -7)   
Rosie, you didn't just hit the jackpot, you won the lottery! I'm so very happy for you. What a difference this will make in your life.

Lovve,

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/16/2007 10:05 AM (GMT -7)   
Sounds great, Rosie! I hope I get as lucky w/my new rheumy -- only 10 more days till I see him!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Beth1
Regular Member


Date Joined Apr 2005
Total Posts : 54
   Posted 11/16/2007 10:55 AM (GMT -7)   
Rosie,
  I am really happy for you.  Your new Rheumy sounds like my PCP.  I didn't have as much luck with my Rheumy.  You don't happen to live in Virginia do you.  I'm looking for a better rheumy.  Hope you continue to get the same encouragement and care.
 
Beth
 
 
 
 
 
 
 
UCTD 2005, Meniere's since '97, ITP,MVP,Raynaud's
Low WBC, Thrombocytopenia, Brain Fog, Fatique
But Hanging in There!!!!!!!


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/16/2007 11:34 AM (GMT -7)   
Thanks Hippi, Ginny, Patty, Lynnwood and Beth!!

Bare in mind that this fellow is over 60 for sure . . . but he said new info keeps confirming that the labs are just not as dependable as they once thought.

He practices with the Cleveland Clinic at a satallite facility about 20 minutes from my home (nearer than the main campus in Cleveland). I have been w/o a rheumy for almost a year, because the others nearby have been eliminated from my game-plan for one reason or another. Maybe not fare to them, but I had another un-dx'd friend complain about the woman rheumy who dismissed her symptoms (this doc was recommended by two of my other docs!). I just kept waiting and talking to people till I came up with this name because someone's doctor told her he was Marcus Welby. Taaaa daaaa!!! But meanwhile I went all through the summer with some pretty painful issues and no rheymy!! I feel its worth it now because I have a promising feeling about this one.

Lynwood . . . I am so nervous WITH you about your upcoming appointment. I can't wait for the scoop!!

Thanks again!! I feel lighter than air, until my feet hit the floor like a ton of bricks!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 11/16/2007 2:47 PM (GMT -7)   
THIS IS AWESOME!!!! Sounds kind of like my rheumy. She said fire any doc who didn't listen from the day I began seeing her.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Celebrex, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


Audrey Ann
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Date Joined Jul 2005
Total Posts : 815
   Posted 11/16/2007 8:33 PM (GMT -7)   
Rosie, fantastic! I am soooo happy for you! Let's hope that Lynnwood is as fortunate!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 11/16/2007 8:58 PM (GMT -7)   
Rosie,
   Looks like you did score big sis!!! YAY yeah   Maybe you will get a definate dx soon. Keep us updated and take care.
   Good luck lynnwood!! Maybe you will get a Marcus Welby too!! You both are in my thoughts and prayers.
                                                                Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:Methotrexate,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/16/2007 8:59 PM (GMT -7)   
Rosie, Sounds really good. My endo needs to take some lessons from him! I like older docs, they know what its like to be sick and how darn crappy you can really feel and still be up and walking. That is so great!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/17/2007 8:55 PM (GMT -7)   
Thanks Redrose, Audrey, Babs and Marji!! I'm still pinching myself! I truly understand if there is no definitive dx . . l. I'm just relieved that he is willing to treat my pain, fatigue, and other issues. I've recently developed dry, gritty eyes too so he is asking me to get a schirmer's test at my next eye appt. I feel so blessed!!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 11/18/2007 1:26 PM (GMT -7)   
Hi, Rosie. WooHooo!!! That is exactly how I felt after seeing my new rheumy for the first time! FINALLY, someone who would listen! It does make such a difference just to feel like you're not wasting your breath and they really do care! Good luck with your test results giving him enough info. to be able to point to a definite dx. That will only put the icing on the cake for you! Good luck to Lynnwood too, I hope she has the same experience with her new rheumy! Take care and keep us updated!
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 8mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/18/2007 1:32 PM (GMT -7)   
Thanks Sharon . . . if you've had a second appointment, I'd like to know how it went and what kind of treatment plan you are on. Mine will be in 4 weeks.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 11/18/2007 2:19 PM (GMT -7)   
Hi, Rosie. Just this past Thursday was actually my 6th appt. with my new rheumy. He is just a really good listener and I never feel rushed in my appts now. The blood work your rheumy is doing sounds good. My rheumy does mine more frequently than the others did, so we can see what is causing what...hopefully. I used to feel SO stressed before, during, and after my appts. I would literally get sick to my stomach. Because I have reacted to so many meds previously, right now we are just working to get me down to the lowest possible dose on the prednisone. I will be working for the next 2 weeks on tapering to 7mg every other day...then go to it everyday if possible. As I've posted about many times, I actually found the problem with my blood sugar myself as my previous rheumy's were saying I just had in-grown toenails. Now that I've got a rheumy who will listen to me and my PCP is working with me too; I'm controlling my blood sugar and so far not having too many problems tapering. It seems a good deal of what stopped me before was coming from my blood sugar being out of control and it being passed off as "just a little high because of the prednisone". I did experience some pain in the center of my chest during the first couple of weeks when going to 8mg everyday, so I will be watching for that to rear its' ugly head. I waited it out though. I have spoken with members of my local support group who've dealt with pleurisy pains and they said that was normal. It ended up just being a "mimic". It hasn't happened again after those first 2 weeks. My rheumy suspects with my lung involvement, I may not be able to get completely off of the prenisone but hopefully be able to go lower. He just reminded me if any new symptoms appeared or I started feeling worse, to contact him. I can even e-mail this one! It sounds like you've found one who will work with you too now. yeah I wish you the best of luck,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 8mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/18/2007 2:29 PM (GMT -7)   
Great Sharon . . . what is the reason you take 7 mg e/o/d instead of 3.5/day?? Does it hang around in your body that long? or is it a trick used to taper? It so good that you can look forward to doctor visits instead of dreading them. Thanks for the update!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 11/26/2007 2:46 PM (GMT -7)   
Hi, Rosie. Just checking back after the holiday. I meant to say I am trying to taper to 7mg every day. But to make the transition easier on my body, for the first two weeks I take 7mg one day, then 8mg one day; alternating the two. Does that make sense? On the 30th, I will try to go on to taking 7mg everyday. Keep your fingers crossed! Let us know when you have your follow-up with your new rheumy. I'm so happy for you. Take care,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 8mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/27/2007 6:50 PM (GMT -7)   
Hi Sharen . . . Yes! that makes perfect sense . . . good that you are tapering s l o w l y . . . much more successful for most people.

Actually . . . I've been feeling pretty good recently and I actually feel a bit funny going back like this . . . but I'll let him know that things are good right now and he can decide where to go from here.

Glad to see you posting again!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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