How did you get diagnosed?

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AngelTT
Regular Member


Date Joined Jun 2005
Total Posts : 213
   Posted 6/20/2008 5:29 PM (GMT -7)   
I have Ulcerative Colitis and have been having weird symptoms so my gastro doc sent me to a rheumatologist today that was one of the crustiest crotchetiest people I've ever met. So I am not sure whether to go see another rheu doc or just let it go. How do you get confirmation of Lupus? My biggest complaint over the past six months has been unbearable fatigue - I have fallen asleep at my desk several times over the past few months. I also have had chronic hives and several other strange rashes that just popped up for no reason on my face, chest, stomach and back (no "butterfly" rash.) I get sores on the roof of my mouth and it makes it very painful to eat. I have joint pain - my back has been hurting a lot lately and the crotchety doc today said it might be the spondylitis or whatever but it is treated with Remicade which I take anyway. My hands hurt a lot, and every few days my left hand hurts like it has been hit with something so I can't straighten it out. The lymph glands in the back of my head swell all the time for no apparent reason.
 
I am not saying I have Lupus, I was just hoping the doc today would be more helpful. He said what I have is "painful joints" and that you can't have arthritis unless you are swollen for several days and red. Huh? I am tapering off of Prednisone right now for an UC flare so the "painful joints" has been a little better but before then it had gotten pretty bad.
 
Thanks for any insight!!
34 year old female, Diagnosed 5 years ago
Current Meds: Remicade every 6 weeks, Prednisone 10mg (tapering), Prevacid, Sustenex, Lialda, Lexapro (anxiety), Synthroid, Iron, vitamins, Fish Oil
Expecting first child 12/08 via gestational surrogate!!!!


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 6/20/2008 7:23 PM (GMT -7)   
I don't think you had a very good rheumy consult. "Painful joints" is(are?) something a good rhuemy would look further into and determine an actual cause for. "Can't be arthritis unless it's swollen & red for several days"? That's a bunch of huey! Did this guy even listen to your other symptoms?

A good rheumy will take a through history at the first visit, asking about all kinds of things you never even thought might be related to anything like arthritis. I highly suggest that you find your local lupus group (a local chapter of www.lupus.org) and call them. Find out what doctors are active with the group. These will be the docs who are interested in lupus and other AI diseases, and will be willing to do the proper investigation to get you some relief.

There are several useful links in my signature that will give you a lot more reading material -- in particular, the "4 of 11" link will talk about what dx is based on. Come on back when you get more questions! And I hope you locate a more comprehensive rheumy soon!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 6/20/2008 11:59 PM (GMT -7)   
Hi Angel,

I agree with Lynnwood's post !!

Some of your symptoms do overlap between UC and Lupus . . . but the rhuemy STILL should be addressing the joint pain issues. He also should have checked into the Ankylosing Spondylitis issue or referred you to someone who could.

Next time you have the mouth sores, make sure to take pictures of them. You can bring these in to the next doctor/rheumy appointment.

I'm wondering too if you have Crohn's and not UC. Maybe it doesn't make any difference because of your treatment . . . but the Chrohnie's also get mouth sores and joint pain.

I would do as Lynnwood suggested and find a rheumy who WANTS to treat lupus/autoimmune patients.

Sorry your were treated so poorly by this "doctor".

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, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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


chrissy
New Member


Date Joined Jun 2008
Total Posts : 7
   Posted 6/21/2008 4:18 PM (GMT -7)   
Lynnwood said...
I don't think you had a very good rheumy consult. "Painful joints" is(are?) something a good rhuemy would look further into and determine an actual cause for. "Can't be arthritis unless it's swollen & red for several days"? That's a bunch of huey! Did this guy even listen to your other symptoms?

A good rheumy will take a through history at the first visit, asking about all kinds of things you never even thought might be related to anything like arthritis. I highly suggest that you find your local lupus group (a local chapter of www.lupus.org) and call them. Find out what doctors are active with the group. These will be the docs who are interested in lupus and other AI diseases, and will be willing to do the proper investigation to get you some relief.

There are several useful links in my signature that will give you a lot more reading material -- in particular, the "4 of 11" link will talk about what dx is based on. Come on back when you get more questions! And I hope you locate a more comprehensive rheumy soon!


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/21/2008 11:52 PM (GMT -7)   
I would definately look for a new rheumy for a second opinion but make sure the doc is a lupus expert. Also check to see if most of the patients are elderly because when they are the doc usually is not a lupus expert no matter what the office says- having a handful of lupus patients does not make one a lupus expert. I wish you were in S.E. Michigan because I could tell you a really good rheumy to visit.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 6/24/2008 3:49 PM (GMT -7)   
(((( Angel )))) what a terrible experience you had. I agree with the others, I don't have anything to add just wanted to welcome you and tell you to hang in there until you find a doctor that will listen. They are out there sometimes you have to see several until you find the right one for you.

Take care and keep us posted.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 6/25/2008 8:02 PM (GMT -7)   
Check out the Lupus Foundation of America site.  Here is the page that describes diagnosing lupus.  Explore the site...there is much more to help you.
 
 
It is important to find a rheumatologist who is experienced with lupus.  Other doctors will not have the experience to help you.  Doctors who are part of a university hospital or clinic that has a rheumatology department are usually the best and most experienced.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 6/26/2008 6:57 AM (GMT -7)   

Thanks Bill !!

In case Bill's link isn't working for you - it does work if you copy and paste it into your browser.

I tried to include it in this post . . . but it wouldn't work for me either.

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, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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

Post Edited (AlwaysRosie) : 6/26/2008 8:01:17 AM (GMT-6)


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/26/2008 8:19 AM (GMT -7)   
Angel, I completely agree with the others. You did not get a good rheumy the first time around and it would be worth getting another opinion. A lot of us, including myself, have had to go through several rheumies before finding a good one who will really listen and try hard to figure out what is causing your symptoms. My first rheumy didn't listen at all. I had my second rheumy for almost 2 years because initially she seemed more interested and called what I had "lupusy" but as I got sicker and sicker, she wouldn't help with changing or adding any meds, so I decided to see a different rheumy. I was so sick by the time I saw him that he diagnosed me that day and worked with my meds to help me be as comfortable as possible. I am now doing the best I've ever done, so a good doc can make all the difference.

Hang in there - there are a lot of people who are in diagnosis limbo. Please continue to ask any questions that you have. I'm glad you joined us and I hope you will keep us posted on what is going on with you and what you find out.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


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