Introduction & Newbie Question

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Angi74
New Member


Date Joined Sep 2012
Total Posts : 6
   Posted 9/21/2012 10:50 PM (GMT -6)   
Hello Everyone!
My name is Angi. I am 37 yrs old. I have been sickly most of my life & was diagnosed with Lupus(SLE) in 2010.
My question is this: Is it normal to be diagnosed with a new syndrome or disease? The Docs just piling them on! Here is my list:
Lupus (SLE)
Reflex Sympathic Dystrophy
Complex Regional Pain Syndrome
Sjogren's Syndrome
Raynaud's
Ostoearthritis
Fibromyalgia
Degenerative Disc Disease
Spondyloarpathy
Fibrocystic Breast Disease
Chronic Fatigue Syndrome
Migraine, Tension, & Lupus Headaches
Chronic Pain Syndrome
Pluersy
Restless Leg Syndrome
Costochondritis
Endometriosis
GERD
Wilson's Temperature Syndrome (which some of my Docs saidis a fake syndrome)
This can't be normal can it??
Thanks!, Angi

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7698
   Posted 9/21/2012 11:11 PM (GMT -6)   
Sometimes I've found a Dr will mention something but when I closely examine a bill or something with diagnosis codes on it, the diseases they mention are not even on it!!! Once I ask and they told me that often they mention things that are side-results of things they have actually diagnosed that ARE on the paperwork -- they do this so the primary illness is featured for the insurance company. Have you seen all these on paperwork? Maybe something like that is happening if you haven't.

Another thing that could happen is overlapping symptoms -- For instance, Chronic fatigue syndrome and Lupus overlap. If you were diagnosed with Lupus first, that would cover CFS -- but if a Dr sees you and your fatigue is the main issue, they may diagnosis CFS without checking into or knowing about any Lupus symptoms. Are all your Drs talking with each other? Sometimes we patients have to be the main communicator to let everyone know what everyone else has said.

Or some illnesses/syndrome/etc can be side-effects of medications.

Some of us are pretty sick, and have lots of side-diseases like this that are active or have been mentioned along the way. So it could be quite normal!

I'd sit down with my current main Dr and go over them and see what is really a pertinent diagnosis for today and how it's being addressed. It's quite possible that these are all accurate, but sounds like a review might be in order to calm your mind and make sure of what is primary and why and that the treatment focus is in the right place.

Try not to worry!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Angi74
New Member


Date Joined Sep 2012
Total Posts : 6
   Posted 9/21/2012 11:34 PM (GMT -6)   
Thank you so much for answering! I have several Docs & on my last appt with each I asked them what all do I have? I do not think they talk to each other. I have numerous Docs in different cities. I have had cancer 3 times. I have had 12 liver stents & numerous surgeries all over my body. Each time I get a procedure or surgery I get really sick & am staying sick longer each time. My Rheumy sets a timer @ my appts & when the timer dings she gets up & leaves, even if she or I am in the middle of a sentence. My PCP said there are only 2 Rheumys in our state so I feel I have no options on a 2nd opinion Rheumy. I am just worried because I have gone down hill in the last couple of months & don't seem to be getting better. It just seems to me if I had all that I would not be able to live...
Thank you so much again for talking to me about this I try not to complain or talk about because I do not want to upset my Hubby or kids.
I wish everyone well & that everyone be as pain free as possible!

Angi

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/22/2012 7:50 PM (GMT -6)   
Angi, since I was 35 every year one of my doctors stuck some new diagnosis on to me. I'm getting to expect something new at every doctor's appointment.
I'm lucky if my rhuemy talks more than 5 minutes to me.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Angi74
New Member


Date Joined Sep 2012
Total Posts : 6
   Posted 9/23/2012 1:51 AM (GMT -6)   
Joy, I know what you mean. Every time I go in I ask "What did I win today? I may never win the lottery, but I always win something when i come see you!" Last visit I won Spondyloarpathy & Chronic Pain Syndrome. She also said she thinks I have another underlying Auto Immune Disease but she doesn't know what it is yet.
Why do the Rheumys not take the time to talk & explain things? Mine sets a timer for 20 mins, by the time she is done giving me my test results from last time I have no time to ask questions. When the timer dings she gets up & walks out in the middle of my sentence or one of hers.
Thank you for responding it is nice to know I am not alone. I have felt very isolated. I don't know anyone else with Lupus. When I got diagnosed my job fired me the day I told them. I had not missed any days @ work no matter how sick I was. We have 6 kids but only 2 left @ home.

Love To All
Angi

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/23/2012 1:15 PM (GMT -6)   
I know one other person with lupus but her lupus is more celiac based. She keeps trying to convince me to go glutin free when I don't have celiac symptoms.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Angi74
New Member


Date Joined Sep 2012
Total Posts : 6
   Posted 9/23/2012 1:47 PM (GMT -6)   
I have intestinal problems but tested negative for celiac disease, no wheat or dairy allergy. I had a colonoscopy Monday & go in Oct 3rd for the results. My rhuemy told me a gluten free diet would not make a difference in my case. My major pain complaints are are joints and headache. My headache never goes away, when my headaches get really bad I get disoriented, slurred speech, & use the wrong words. My sentences sound like gibberish although i use real words what i say makes no sense. I am dizzy alot also. Thankfully I see a nuerologist this coming week.

A Big Thanks & wishing you all well
Angi

Zebra2014
Regular Member


Date Joined Sep 2012
Total Posts : 46
   Posted 9/28/2012 6:22 PM (GMT -6)   
Oh, Angi! I just now read your note and my heart (really, truly) goes out to you. Seems like you just can't catch a break!

I was also stunned to hear that there are only two rheumatologists in your state. Wow! Please forgive me if you've already thought of this, but is there any chance you could see a rheumatologist associated with a medical school in your state? I ask, because I recently switched to a rheumatologist that is assocated with a well-regarded medical school, and not only is her knoweldge base astounding, but she is personable and patient, and I can't imagine she would ever set a timer during an appointment! I have had two in-person appointments with her, and because it's currently hard for me to trek into the city to see her, she has also phoned me and e-mailed me at home. Can you believe it? I feel truly blessed to have found her, and I hope and pray that you might be able to find someone just as good.

Warm regards,
Nina
Diagnosed with SLE 2010; MCTD 2012
Medications: Plaquinel (300 mg); CellCept (1,000 mg)
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