Advice Needed PLEASE

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Redhands
New Member


Date Joined Jan 2008
Total Posts : 8
   Posted 1/22/2008 3:43 PM (GMT -7)   
   I have not received a lupus diagnoses, but for many years I have felt  that is what is wrong with me . My symptoms started in 2002 and would go away for many months after a steroid shot. very very tired achy hurt all over feels like the flu, temp. of around 100, muscles feel week, rash on face (doc says malar rash) hands and chest, rash started in 2007 gets worse with sun. since 11/07 i keep getting ulcers on the roof of my mouth, lots of pain in my hands and shoulders.  I have been diagnosed with anemia, arthritis, have had pleurisy 3 X's  raynaud's and some type of connective tissue disorder. My ana has been 1:160 speckled pattern 2X's. Since 11/07 these symptoms have not went away, they got a lot better with a steroid shot, but come back slowly after about 10 days(rashes never go away) So my doc sends me to a reumy.(this took 6 wks) they asked a lot of questions took some blood  and give me an Rx for pamolor they said for sleep ( i have no trouble sleeping ) HA !  and to come back in 3 wks. they think it could be connective tissue disorder or fibro ( i have none of the trigger point for fibro) also said that ana was ok? lab results clearly state out of range. Saw the ulcers on the roof of mouth said yea those are ulcers. Does this sound like lupus to you?  And what should I do in the mean time I feel worse each passing day and after the rheum appointment am just totally frustrated. Any suggestions or  help would be much appreciated.. :-)

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/22/2008 4:06 PM (GMT -7)   
Hello Redhands,
 
Yes, those do sound like Lupus symptoms, or a mixed connective tissue diesease of some sort.  Sometimes, people get a diagnosis of MCTD (mixed connective tissue disease), if the blood test results are "iffy" for lupus.  But the two are treated with the same medications, etc.
 
I would HIGHLY recommend seeing another rheumatologist.  Someone who doesn't work in the same office as your current one.  It's not unusual to have to see 3 or more rheumies until someone finally gets it!!  This is a very frustrating disease to diagnose and live with, as you know....
 
Have you had a full lupus panel blood test done?  If you have the results of any of the other tests you've had, you can post them and we'll be able to help you further.
 
In the meantime, get another opinion.  Keep seeing doctors until you find one that will truly listen to you and do all the right steps!
 
Keep us posted!
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


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 1/22/2008 4:11 PM (GMT -7)   
Redhands-

I'm not sure how much research you've done on Lupus, but unfortunately it can take some time to diagnose. Most of us on here did not get diagnosed on the first visit. Another thing that stinks while you wait is that doctors will treat only the symptoms until they can prove you have Lupus. I feel for you. You have something going on. Just be persistant and a helpful thing to do for your doctors is to keep a log of the things that happen daily to you. Keep track of your temp, rashes -whether they get worse or better. Rate your joint pain and muscle tenderness, fatigue and swelling on a scale of 1-10. Take this to your next dr. appt. and be sure to call them when you are having problems that are very uncomfortable for you. Anytime I have something more out of the ordinary going on I call my Rheumy's nurse and she takes care of it for me. That's what they are there for. They may tell you that you need to come in-and the best part about contacting the nurse with your conditions (at least in my dr. office) is that they can usually sqeeze you in if you need it.

Hang in there and keep us posted.

Firebabe
~Firebabe~
 
"Challenges make you discover things about yourself you never really knew."
 
SLE and Class II Lupus Nephritis


Redhands
New Member


Date Joined Jan 2008
Total Posts : 8
   Posted 1/22/2008 4:44 PM (GMT -7)   
Thanks so much Ginny and Firebabe, the test that were last run were SSA- SPE- ACA -Lupus anti coagulant and another ANA. I should have the results in 3 wks. the only other previous tests were the ana(1:160 speckled) and sed rate (normal) In the last 5 yrs. I never worried about it much because I knew when my symptoms became unbearable my Dr. would give me a shot and I would feel better. Now without one since Dec. each day I feel worse and more hopeless. The rheumy. I seen said nothing could be done until I come back in 3 wks. The sores in my mouth are driving me crazy I've tried peroxide but they are not better, is there any thing else I can try? Many thanks!~redhands~

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/22/2008 4:56 PM (GMT -7)   

Hi Redhand,I'm sorry you are having so much pain. It sounds like the others have given you some good advice. it is very frustrating but the doctor should have given you sommething for your mouth. The last time I had the sores in my mouth they gave me nystatin. One of the main ingredients in it is malox. the pharmacist said that she swears by swishing her mouth out with malox. than spit it out if you don't need it for your stomach. I tried it and it really helped. I would give it a try if I were you. It's not that expensive and if it helps it's well worth it.

Good luck and let us know

hugs

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,Singular,nitro spray, aciphex, diovan. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/22/2008 6:59 PM (GMT -7)   
Redhands...
 
So sorry you are having so much pain and frustration.  Unfortunately, you are in good company here.  I'm fairly new here...but the one thing I can tell you is everyone is so helpful and good at listening.
 
I was diagnosed this past July - but I had been being treated for tennis elbow for a year & a half prior to that...and, the cortisone shots helped me too...but they would only last about three months.  When they stopped helping, my PCP sent me for the arthritis panel which showed high ANA.  Then to the rheumy and all the other tests.  The Anti-dsDNA sealed it for me.  Did they do that on you?
 
I find it hard to believe that the bloodwork is going to take three weeks.  That is just when they scheduled you back.  I'd call the office and ask if you can pick up your test results so you can do a little research of your own.
 
The one thing I've learned in the past six months is that you are the expert on you...not the doctors.  While, we need their expertise, they aren't experiencing what we feel.
 
I'm not always thrilled with my rheumy...but yours sounds a bit stand-offish.  I think I'd search for another one.
 
~Kim
 
 
 
 
 
 
 
 
 
 
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


Redhands
New Member


Date Joined Jan 2008
Total Posts : 8
   Posted 1/22/2008 7:18 PM (GMT -7)   
Okie thank you!! at this point I will try anything for the mouth sores.
Dakota0917 as far as I know they did not do a Anti-dsDNA test and I'm not sure why they picked the tests they did most look odd to me have no idea what there looking for!! I'm beginning to think I went to a nut!!LOL! I think i"ll wait a few days and give them a call. I had to travel over 2 hrs to get there but I think it will be worth the drive. Thanks so much for the support and kindness makes me tear up i wish i had found this place years ago!! Thanks again everyone!!
~Redhands~


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/22/2008 7:53 PM (GMT -7)   
Just an FYI:  My rheumy will mail my lab results to me if I send them a self addressed stamped envelope.  With being two hours away, you might inquire about that.  It would still probably be faster than three weeks!
 
~Kim
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/22/2008 8:06 PM (GMT -7)   
Redhands,
 
If you go to www.labtestsonline.org, and type in the names of your tests, it'll tell you what they're testing for.  We use that website a lot and it's reliable.
 
3 weeks is the norm for those specialized tests.  Unfortunately!  Another remedy for your ulcers is just good old salt water.  Like Dr. Oz from Oprah says, "If you wouldn't put it in your eyes, don't put it in your mouth!"  Peroxide is a big no-no! 
 
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


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/22/2008 8:36 PM (GMT -7)   
I suggest you check and see if the rheumy you were sent to is a lupus specialist or just a rheumy- there are few rheumys who are lupus specialists though everyone assumes rheumy=lupus specialist. I also have had mouth ulcer problems. Before I got pregnant I was taking evoxac for dry mouth and ironically while I was on it my mouth ulcers went away. So I suggest trying some of the OTC dry mouth products like oasis, there are others but the brands escape me at the moment.
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, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/23/2008 5:28 AM (GMT -7)   

GINNY, I would Not put a fork in my eye!  sorry sweetie, I couldn't help myself. But it's emmie's fault she told me to keep my attitude!

love ya

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,Singular,nitro spray, aciphex, diovan. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 

Post Edited (okie) : 1/23/2008 6:51:24 AM (GMT-7)

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