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Blubryprncss
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 1/9/2008 3:40 PM (GMT -7)   
Hi All!
 
As you all know I am just learning about lupus. I have spent alot of time the past few days reading up on it. After doing all of this reading I am finding out that a lot of the problems I have been having such as: muscle weakness in my legs, forgetfullness, hip pain,  numbness in hands and feet,etc could in fact be coming from the lupus. Here is my dilemma.....I haven't mentioned these symptoms yet to my doctor, do I mention it to my doctor? Will my doctor think I am a hypochondriac?
 
Also, I have another question for the forum. Have any of you informed your doctor that you participate in this forum? If you have how well was it received by your doctor?
 
I would appreciate any and all advice.
 
Thanks,
Blubry
diagnosed rheumatiod arthritis, raynauds, MCTD 2002, lupus 2007
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/9/2008 4:02 PM (GMT -7)   
Hey Berry,
 
Yeah, you should mention ALL your symptoms to your rheumy/doctor.  Numbness, tingling etc, is pretty important to mention.  It's good to rule out if you are having actual disruption to your nerves (via bad back, disc degeneration, etc), or if it's just plain old stinkin' lupus that is causing it.  I'm actually dealing with this exact thing right now too.  I have arthritis in my neck, and lots of tingling and numbness in my hands and feet.  So I'm having an EMG and another test, which I can't remember the name of, to figure out if the arthritis is causing the symptoms, or if it's my lupus. 
 
Always, always, always, mention symptoms like this or anything else to your doctor.  They won't think your a hypochondriac for bringing them up. You have lupus, sweety.  It's going to be a bit of a gong show when it comes to your health now, and they know that.  Unfortunately, when it comes to lupus, everything becomes more complicated and more serious.  Even little things have to be taken seriously. You'll learn so much about this disease in the coming weeks and months and even years.  You'll even start to talk like a doctor! (that freaks my family out, in a good way. LOL)
 
I have mentioned that I participate in an online support group.  My doctors think it's great.  The more support you can have with this disease the better.  When I first mentioned I was a part of this group, they cautioned me.  Which is the responsible thing for them to have done.  We're not doctors here, and have limited knowledge.  So it's always important to make sure you're getting the right information.  If you don't want to tell your doctor, you don't have to.  I think wording the forum as a "support group", might be a good way of saying it!
 
I hope this encourages you!
 
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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/9/2008 6:37 PM (GMT -7)   
Berry,

In a word . . . "yes" . . . you should mention ALL symptoms to your doctor. . . always.

How will he/she receive it?? Separates the good docs from the bad. When I finally put all of this together, I took my symptom list into my pcp and he made a joke out of it. "Why, this sounds like lupus . . . have you been reading about lupus???" My response . . . "yes . . . all my symptoms pointed to it and then I found that I had lots of other symptoms that I had never complained about." His response . . . "its all in your head" . . . several doctors later . . . lupus dx and a couple more docs after that, I finally got some help. None of the several doctors I had seen ever told me that I should be seeing a rheumatologist!!! I learned that at a lupus support group meeting after suffering with extreme pain for many months.

Bottom line . . . give all your info . . . every doctor visit. As far as telling them about the online forum . . . the good doctors appreciate a knowledgeable patient. I did have one doc tell me to stay away from the internet . . . I did just the opposite and it has helped me tremendously.

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


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 1/10/2008 9:16 AM (GMT -7)   
i very much agree with ginny and rosie, even the little things you notice you should tell your doc. everytime i tell my mom that i dont feel well or something hurts she automatically asks when my next doc appt is and tells me to make sure to them and after the appt she asks if i told the doc what i told her. my hubby does the same thing. i also feel like i dont wanna tell the docs everything cuz i dont want to sound like a hypochondriac and now that i am pain meds i dont want them to think i am just a pill seeker. but fortunately none of my docs do that. everytime i tell my pcp something is bothering me he schedules a test to check and when i told him about my back, hips, and ankles a few months back, he didnt hesitate to order x-rays and then ct scans and mri's. its hard to deal with lupus especially when docs dont believe you and then u have to try to convince them. in the beginning for me, my mom took care of everything and i just had to get in the car and take my meds ( i was 13 yrs old when i was diagnosed). and i dont remember which docs i told about my support groups but i'm still on them so i guess they were supportive about them (sorry lupus fog). good luck, sister.
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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/10/2008 9:34 AM (GMT -7)   
BTW: I just keep a list going on my computer. Then when I have a doctor appointment, I print it out and bring an extra copy for the doc. Good docs LIKE this.

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
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/11/2008 8:57 AM (GMT -7)   
I agree with everyone else about mentioning ALL symptoms to your doc even ones that seem little or not related to lupus. Each symptom is a piece of the puzzle. Rosie's idea of keeping a symptom list is a great one - I tend to forge things if I don't write them down, and I try to take a list of all my symptoms and questions to all of my appointments.

I did mention belonging to an online lupus forum to my rheumy and he seemed fine with it.
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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums


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