I have to say I am a little disappointed......

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KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 12/14/2007 1:20 PM (GMT -7)   
You all came across to me as a very informed and helpfull bunch......when I asked if anyone can offer a  recommendation of your rheumy I thought maybe atleast a few of you would help me out sad I don't know, maybe nobody likes their rheumy that much to recommend them or maybe you just don't feel comfortable posting his/her name on here?
Anyway, just wanted a little "help".
 
KaAl
 

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 12/14/2007 1:40 PM (GMT -7)   
Hi KaAl,
   I knew I wouldn't be any help in NJ. I'm in Alabama. Hopefully, someone will come along soon from that area that can help.
                                                     Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 12/14/2007 1:40 PM (GMT -7)   
i dont think that it is a matter of not wanting to post doc names or give you personal recommendations, but rather a problem with location. Most of us are all over the place, and maybe someone close to your area just hasnt read your post yet. dont give up, i know that sometimes it is hard to find a doc that you can feel comfortable with, i think most if not all of us have had that problem. keep your head up and stay strong.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 12/14/2007 1:54 PM (GMT -7)   
Yes, no one here is purposely ignoring you KaAl. I'm not sure how many of us are from NJ.  If you don't get any responses, please take the owness on yourself and contact your local Lupus chapter.  Here is the link for the New Jersey chapter. http://www.lupusnj.org/
 
I'm sure they will have plenty to offer you as a local resource.
 
Have a good day, okay! scool
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


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 12/14/2007 1:58 PM (GMT -7)   
I don't remember running into any members that are in NJ -- we can't help you from thousdands of miles away! Wish we could!!!

I think you might have to "bite the bullet" and either try a doc the lupus foundation suggested or make your way to a lupus support group to talk to real people. I know that both options can be very daunting and overwhelming -- if you'll let us know before you go & after you get back we can at least be thinking of you while you meet people.

I was very lucky in that my primary care doc recommended someone immediately, so I didn't have to do the initial blind search that you are having to tackle. It was bad enough doing the search after my doc of 7 years had to quit his job!

We do understand your situation, and would love to help, but.....we just don't seem to have anyone in your area.

Take care, and keep trying,

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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/15/2007 4:12 AM (GMT -7)   

Hi sweetie, I'm sorry you wern't able to get a response. I do know that things have  been a little slower than usual around here. I'm guessing the weather and holiday may have something to do with it. I live in oklahoma so I wouldn't know of anyone where you are but this site might help you. You'll have to look around it a little but you should be able to get some answers about doctors and what others have to say aboiut them in your area. Many of us have used this site. it takes a little to get the hang of it but I am sure you wil find some answers.

here is the link

try this link first it will get you closer to what your looking for

http://ratemds.com/filecache/SelectDoctor.jsp?sid=32&orderby=DSpecialty&letter=R

http://ratemds.com/social/

you can find what ever kind of doctor you are looking for and what others think of them. If it doesn't help please let us know and maybe we can help more. Also if you look in the yellow pages for your area on the computer they usually have some personal info on doctors. I know it's difficult. It took me 4 months to get into a rheumy just to find out he was worthless in the end. So I'm back to trying to find a new one.

good luck

carol

 



God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 

Post Edited (okie) : 12/15/2007 4:19:17 AM (GMT-7)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 12/15/2007 7:20 AM (GMT -7)   
Wow KaAL . . . you were very hard on us with your comment. We try REALLY hard to support one another and a non-response is most always indicative of being unable to answer your question OR that someone else already said what I/we may have added. The mods here are volunteers and we give what we can here.

I went back and looked at your last topic and you did get some responses. I also see that you contacted your local Lupus Foundation Chapter and were not comfortable choosing from their recommendations.

If you want FIRST hand info about a doc in your area . . . you need to find local people to talk to. Your local Lupus Foundation Chapter is the first stop. They do have a list AND they may have monthly support group meetings. If they do, you can attend a meeting and ask the other members what docs they use.

Good luck in your search.

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


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 12/15/2007 7:59 PM (GMT -7)   
WOW I was more then a little shocked when I read this thread. I am in Canada so really unable to tell you anything about any type of Doctor where you are. I found my rheeumy by speaking with my GP and then calling my local support group for their opinions. But you might end up in the same boat as the rest of us and have to DR shop. As one what person likes might not suit another. The best thing to do would just be find a Dr go and seem them and then "you" can find the best Doctor for " your" fit.
 
Best of luck to you.
 
Angela
UCTD and sjogrens ( terrible dry mouth) Plaquenil 400 mg with 150mg of diclofenac as needed, all biotene products and refresh liquigel eye drops 


KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 12/19/2007 11:51 AM (GMT -7)   
Ok, I thing that my post was taken out of context. My intention was not to attack or criticize anyone. I was just simply trying to say that I was disappointed. That’s it! I know that I can contact the Lupus org (and I did that) all they did was give me some rheumatologist names, not ones that are concentrated more on Lupus (I can get that on my insurance listings). I thought to myself that, with all the thousands of people that visit this board, it’s a good chance that I would get some recommendations of rheumatologist that are more Lupus literate.
So, if my post came out as harsh, that was not my intention. The bad thing with the net is, you don’t really hear the tone of a person…..
I’m just tired of going from one doctor to another, only to come out of the room disappointed.
Anyway, just wanted to clear things up.


KaAl

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 12/19/2007 10:26 PM (GMT -7)   
KaAl,

The rheumies listed at the Lupus Foundation are rheumies who have asked for Lupus patients. Try a local support group meeting . . . then you'll be able to talk to some real people from your area. Even if you have to drive an hour to get to a meeting, it might be worth it.

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


KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 12/21/2007 10:07 AM (GMT -7)   
Oh, ok, thanks AlwaysRossie. The lady on the phone did not tell me that!
 
KaAl

Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 12/21/2007 11:56 AM (GMT -7)   

KaAl,
Even getting a referral from someone here could leave you with a disappointing doctors visit.  I received a referral from a lady in our car club who has lupus, swore by this doctor that he was fantastic ... so I make an appointment, he looks me in the face and tells me it's all in my head.  Received a second referral from my doctor where I use to live by this dr who is head of the department at University of Vanderbilt.  He says you don't have lupus, you have fibromyalgia, do you want to go on my study?  Two referrals, two disappointing doctor visits.  Third referral, don't go to Dr. R ... after three years I have no choice, he's my last choice.  I go to Dr. R ... he listens, he cares, he tells me I have lupus and he is very concerned about my labs, wants to see me every 3-4 weeks.  Go figure, the one dr I was told to stay away from turns out to be fantastic. 

We all go to many doctors before we find "that perfect doctor" ... and you'll probably end up having to do the same.  Sorry. :(

 

 


Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06, Enchondroma on my skull 11/07
Plaquenil, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Pepcid, Folic Acid, Loratab ,Percoset, Toradol
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/21/2007 12:17 PM (GMT -7)   
Yup, Gidget is right.  I went through 3 rheumatologists and a decade of seeing specialists before I was taken seriously.  This isn't a quick fix kind of disease, and it might take a few or many doctors to get the answers you need.  I hope that's not the case for you, or anyone else, but it's reality.
 
Don't give up trying if it turns out this way for you too. 
 
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, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 12/22/2007 2:54 PM (GMT -7)   
Thanks ginny and gidget.
 
Gidget, I had the "it's all in your head" diagnosis as well. It's so frustrating to hear that, when you know it so not! I have left doctor's offices in tears sad . You go to these doctor's with hopes of some answers and walk out of there disappointed. I can't even tell you guys how many doctors I have seen. Sometimes I just feal like giving up. When I say give up, give up in the sense of going from doctor to doctor............ But, I can't. When I think of my kids sad .
 
KaAl

canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 12/25/2007 11:34 AM (GMT -7)   
I went to 14 rhuemy's, 6 Gp's and now am on my third neuro. Not to mention ENT doctor's, dermatologist, opthamologists and now internal med doctor's. I don't think any of us like having to go to all these doctor's unfortuantly for us it's now a part of life.



UCTD and sjogrens ( terrible dry mouth) Plaquenil 400 mg with 150mg of diclofenac as needed, all biotene products and refresh liquigel eye drops 

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