Who Diagnosed You and What Were First Symptoms?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

mimik81
Regular Member


Date Joined Jan 2008
Total Posts : 88
   Posted 7/28/2008 6:09 AM (GMT -7)   
Hi,

I have been a member of HealingWell for awhile in the Crohn's group. Lately, I've been experiencing some weird things, and I wanted to ask how you guys were diagnosed and what were the initial symptoms?

I've been having some joint pains in my fingers and knees, awful headaches, difficulty concentrating, fatigue, anemia, and I was recently taken to the ER with lung inflammation. I've always had face redness.... but my dermatologist always said it was rosacea.

Does this sound like it could be lupus?

I already have one auto-immune disorder, does anyone out there have something in addition to lupus?

Thank you all for your help!
Crohn's Diagnosed in 1996.
Currently on Humira - One syringe every other week.
Now in remission.
Have tried Prednisone, Pentasa, Flagyl, Cipro, and Imuran in the Past - they aren't effective now.
Hospitalized only once, but that was enough!


mygrljes
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 7/28/2008 6:34 AM (GMT -7)   
Hi Mimi,

When I first started having symptoms, it started out with joint pain and swelling in my fingers, wrists, elbows, and ankles. Then, my eyelids started swelling shut and I was having severe lower back pains. I also had the fatigue, sleeping for 16 hours a day, and a rash on my face. All of those symptoms went on for 2 years before my diagnosis.

I was finally diagnosed after being rushed to the ER because I was going into kidney failure, my lungs were inflamed(pleurisy), and I had the worst case of strepthroat ever.

As far as other things besides lupus, I also am hypo-thyroid. Thankfully, nothing else is going on.

I hope you get some relief soon.

Robin
dix: lupus sle Jan. '99, hypo-thyroid Mar. '06
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day, methotrexate 7.5mg/week, folic acid 1mg/day
wife, mother of three


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/28/2008 7:20 AM (GMT -7)   
I was diagnosed by my fourth rheumatologist. I had experienced minor symptoms off and on for 20 years. They would generally last only two or three weeks at a time, a couple of times a year. Butterfly rash, low grade fevers, extreme fatigue, hot swollen joints, and it's been so long that I don't remember what else. Then I had a full blown flare four years ago with more severe and other symptoms that lasted, well, it's finally tapering off.

You probably know that people with one autoimmune disease are more prone to develping another. Take a look at the Resources site on the main Lupus page. I think you'll find lots of good information about lupus there. You'll also learn a lot about lupus by hanging around here and asking lots of questions. It's an awful hard disease to diagnose and of course the first place to start is with your doctor. Take a look at the 8th post in the Recources tab. It's a great guide for all of us.

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


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 7/28/2008 8:26 AM (GMT -7)   
Hi mimik, I was dx by my third rheumy in 2005 after having problems for a couple of years. My symptoms were: joint pain, extreme fatigue, positive labs and GI issues not resolved after dx w/ Celiac and going gluten free. After reading about lupus I discovered I had been having symptoms since I was a teenager, mainly with my reaction to the sun.

You should mention these new symptoms to your doctor, maybe he/she can run some blood tests and go from there. Hang in there
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, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/28/2008 9:01 AM (GMT -7)   
mimik, I was diagnosed by my third rheumy (a lot of us have had to go through several docs to find a good one). My pcp suspected lupus long before I was ever diagnosed. My very first symptoms were extreme fatigue, weakness, brain fog and generalized pain. Over time I developed joint pain and swelling, hair loss, mouth sores, sun sensitivity, rashes and other lovely lupus symptoms. Patty is right about a lot of us having multiple diagnoses. I was recently diagnosed with mild ulcerative colitis. I hope you can find a really good rheumy who specializes in lupus who can help you figure out your symptoms and give you an accurate diagnosis. Please let us know what other questions you have.
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



Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 7/28/2008 7:39 PM (GMT -7)   
Initial symptoms were low platelets and mild anemia.  My hematologist speculated that I had lupus but it took several more months before my rheumy diagnosed lupus and then mctd.
 
First physical symptoms were swelling, pain and redness in both feet, ankles and lower legs which spread fairly rapidly.  Also had joint pain and some muscle weakness and incredible pain everywhere.
 
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
 
 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/29/2008 7:24 PM (GMT -7)   
My experience was very similiar to Robin's. I had the worst case of strept, went into kidney failure. They originally thought it was post strept glomerulonephritis, turns out it was lupus. Incidentally, my brother has Crohn's disease. A really bad case, if you can say it like that. I know several people who have Crohn's disease and Lupus. I pray you find an answer soon. God Bless You, Judy

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 7/31/2008 4:56 PM (GMT -7)   
Hi Mimik,
   I was diagnosed by a PCP in 1990 that sent me to a rheumatologist for confirmation. My very first symptoms were constant strep throat for a year at the age of 19 in 1977. From there I started having joint pain, swelling, rashes, fevers, fatigue, wt loss, flu-like symptoms.
   I hope you get some answers and relief soon. Keep us updated and take care. You will be in my thoughts and prayers.
                                                               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.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 7/31/2008 5:29 PM (GMT -7)   
You know I had a bad case of strep throat in 2004 and after that seems to be when the new symptoms started and old ones were magnified. Very strange........
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, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)


curlyhair
Veteran Member


Date Joined Jan 2005
Total Posts : 659
   Posted 7/31/2008 7:59 PM (GMT -7)   
I was officially given the DX by the first rheumy I saw, but my nephrologist strongly suspected it for years. My first symptom was lots of fluid retention, followed by fatigue, joint pain, mouth sores, brain fog, nausea, etc...
 
Sandy
DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus (SLE & Class V Lupus Nephritis) 2005
DX: Anorexia and Hypokalemia 2006
 
meds: plaquenil, amiloride, klor-con


RedAdmin
Veteran Member


Date Joined Aug 2003
Total Posts : 1017
   Posted 8/1/2008 10:34 AM (GMT -7)   
mimik81, I have come to know that NO Autoimmune problem comes alone, it always brings a family member. My husband is the one with the Lupus. His first symptoms was weight loss and vomiting, as it turns out he also has Cyclic vomiting syndrom and Fibromyligia.
Red (Lee Ann)
 Happy Bunny 
      When life gives you lemons, squirt juice in your enemy's eyes.


Jenny S.
Regular Member


Date Joined Oct 2007
Total Posts : 80
   Posted 8/4/2008 9:31 AM (GMT -7)   
Mimik81,

My Mom has Crohns & I have Lupus - how weird is that. The doc's don't know how either on of us got these diseases, but since they are both autoimmune diseses that they are related. I feel sick on a daily basis by when Mom gets sick she's 100% down. Weird I guess ...

Jenny

~Jenny~

I have Lupus ... Lupus doesn't have me. 

Dx: Raynaud's(2000)·Lupus(2001)

Rx: Pletal 100mg·Norvasc 10mg·Prednisone 5mg·Plaquenil 400mg

  


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 8/4/2008 2:19 PM (GMT -7)   
Jenny,
 
It is not weird at all that both you and your mother have different AI diseases.  Studies have shown that AI diseases, while not hereditary in most cases, do run in families.  Not necessarily the same diseases but AI diseases in general. Whatever the inherited gene set that predisposes you it does not determine what disease you get.  Just that your immune system is vulnerable to a disruption.
 
These diseases are related only as far as the genes that allow the disruption to occur.
 
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
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 03, 2016 11:22 PM (GMT -7)
There are a total of 2,732,413 posts in 301,016 threads.
View Active Threads


Who's Online
This forum has 151181 registered members. Please welcome our newest member, carol9.
255 Guest(s), 6 Registered Member(s) are currently online.  Details
carol9, Serenity Now, ggfgfgfdgfgdd98, gdftggfdgfdgf21, pressurehead, TreasureTomorrow2904


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer