In Doctor Hell!!!

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SuperGirl413
Regular Member


Date Joined Apr 2007
Total Posts : 22
   Posted 12/14/2008 4:59 PM (GMT -6)   
Hello,

It's been quite some time since I've been on this forum. I first joined in April of '07. Today I found what I had initially written randomly through a yahoo search. Maybe that was God's way of telling me to reach out for support because right now I am feeling alone, frustrated and confused.

I still have not been diagnosed with lupus although it is a topic of conversation at just about every doctor visit. My ANA is still averages 1:40 and has been as high at 1:160 (although my primary care doctor never contacted me about that result...I found out "accidently" through my OBGYN). My anemia has not improved despite the fact I take iron supplements. The iron binding capacity in my blood is high but the iron isn't binding.

Just got treated for a kidney infection but that area of my back is still killing me. My skin on my face and neck has rashes that won't go away. I get blood blisters on my arms and thighs. I have brown spots on the bottoms of my feet.

I was diagnosed with asthma but I don't think it's right. My lung breathing capacity has decreased and I get out of breath just by going up stairs.

In general, I am tired, lathargic and not fun to be around right now. There's this person inside of me that wants to come out but the weight of my body and how it feels is overwhelming.

I feel like the doctors that I go to just aren't getting it. I do understand that lupus is difficult to diagnose but I can't keep having strings of days, weeks and (this time) months like this. I am tired of hearing that I "may" have lupus. I have been hearing it for 5 years. When does the "may" turn into a diagnosis that can be treated?

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 12/14/2008 6:33 PM (GMT -6)   
Hi Supergirl,
 
I wish so much that I had more to offer you.  I completely understand the limbo that you're in right now. I went through the same thing with all my doctors.  It took a decade for my diagnosis to come, and it only happened because I had become so sick and full of inflammation that the symptoms couldn't be anything but Lupus.  All my blood work was high positive too.  I wish it didn't take a serious incident to convince the medical community.
 
There are some people who have rheumies or family doctors that will begin treatment without a firm diagnosis.  Usually because there is so much inflammtion going on, that starting a regime of prednisone or an immune suppressant is clearly the thing that needs to be taken.  The risk in doing that is that blood work done after treatment has started will sometimes present a very normal, healthy individual.  The treatment is working and so it masks the symptoms and blood work.  It can actually set back the time frame of getting a diagnosis because the symptoms and blood work look fine.  It's a catch 22.
 
Unfortunately, for many of us, the "may" turns into a "definite" once the symptoms get bad enough to warrent a hospital stay in order to figure it out once and for all.  I had a 5 day stay at the hospital.  My symptoms were severe pleurisy, heart palpitations, chronic anemia, and severe weight loss.  I thought I was dying.  So did my family. 
 
Have you been able to see an internal medicine specialist? I had tremendous success with mine.  She was the doctor that finally put the pieces together and believed me when I said I didn't feel well. 
 
I know this is extremely frustrating for you.  5 years is a long time.  I'm going to do some research on your iron problem.  That is something that should be taken seriously by your doctors.
 
Take care Superwoman, post when you can okay!
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

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


SuperGirl413
Regular Member


Date Joined Apr 2007
Total Posts : 22
   Posted 12/14/2008 8:15 PM (GMT -6)   
Ginny,

Thank you for replying to me. I have not had a hospital stay but lately it's getting harder to get out of bed, it takes me about an hour to wake my body up and convince myself to move through the pain.

I have not seen an internal medicine specialist. I have an appointment with a rheum in about a week. I have spent the day writing out all of the things that match lupus and I actually started showing signs in my teen years...the last five years have just displayed more serious symptoms. about a year and a half ago, I asked my doctor to refer me to a rheumatologist when I was physically in her office looking and feeling a mess. I had active blood blisters and poor lab results. She told me she couldn't justify to Kaiser so she denied my request.

I thank God for my OBGYN. He's very thorough and often looks at the big picture in diagnosing my GYN problems. If it hadn't been for him, my doctor probably wouldn't so have so readily written the referral this time.

The iron is something that they consistently look at but they can't figure it out. I feel like I am just one big medical mystery.

Besides writing down all of my sypmtoms for the rheum, is there anything else I should prepare? I want to make sure I give him as much information as possible to make (hopefully) a diagnosis.

Nicole

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5708
   Posted 12/14/2008 8:45 PM (GMT -6)   
If you look at the top of the Lupus forum page, there is a topic called "Lupus Resources" -- It includes hints gathered from a lot of us here -- always good reminders to check before seeing a new doctor.

One thing I always do is try to leave the doctor room to make his/her own diagnosis -- instead of going in saying, "I think I have Lupus", I'd go in with a list of all the symptoms you've had that are giving you trouble -- whether you think they are lupus symptoms or not, throw in EVERYTHING -- I figure they've earned the "MD" and should use it instead of forming an opinion based on my personal research.

Whether anyone gives you a diagnosis or not, they should be treating the SYMPTOMS. May of us are treated for years without the diagnosis - sometimes it's actually better not to have the dx for insurance reasons.

Hope you get to see the Rheumy soonest,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


SuperGirl413
Regular Member


Date Joined Apr 2007
Total Posts : 22
   Posted 12/14/2008 8:54 PM (GMT -6)   
Thank you Lynwood.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 12/14/2008 10:47 PM (GMT -6)   
Hey Nicole,
 
I'm trying to remember what I did in my early years of diagnosis when I went to my rheumy with issues.  I think the best thing I did was to make a list of every symptom I was having.  Even stuff that you might not think is important.  If you have a rash right now, take a picture of it.  Just in case it disappears before you see him next week.  Pictures of rashes are always very helpful. 
 
Is he receiving copies of all your blood work that has been done by the other doctors?  If not, I'd ask those doctors to fax it all over to his office.  As well as any other important information the doctors can offer.
 
I think those are things that will help you.  I sure do hope that this is a big positive step for you.  I'll be eager to hear how it went.  Please send us an update when you can on how it went, okay?! 
 
In the meantime, keep browsing the forum and ask questions as they pop into your head.  We'll do our best to answer them!
 
Have a good start to your week Nicole,
 
Blessings,
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

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


SuperGirl413
Regular Member


Date Joined Apr 2007
Total Posts : 22
   Posted 12/14/2008 11:01 PM (GMT -6)   
Thanks Ginny,

I am with Kaiser so all of my labs are available to the doctor online...even the ones that I can't see. I can see basic CBC, cholesterol, iron...etc but I can't see the more serious ones related to autoimmune diseases. I should try to contact my doctor I had prior to Kaiser...she's the first person to see the positive ANA.

I have expanded my list and per your advice as well as Lynwood's, I am writing everything even if I think it's random or unrelated.

Thank you for your support. It has helped tremendously. My appointment is 12/23 but I may try to call tomorrow to see if there are any cancellations (I read about doing that here). Thanks again. It's nice to know I am not alone.

SuperGirl

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/15/2008 6:50 PM (GMT -6)   
I took pictures of my rashes and such so that if they weren't there the day of my visit I still had proof. It was key in my dx
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, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, now cellcept


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 12/15/2008 9:13 PM (GMT -6)   
Hi Nicole,
 
Were you able to get an appointment sooner?  That's good that your rheumy can view all your recent blood work. The benefits of technology! 
 
You're definitely not alone.  We've all been where you are right now.  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

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1218
   Posted 12/16/2008 3:55 PM (GMT -6)   
Nicole,
 
Keep in mind that doctors are trained to find horses, not zebras.  In other words, they are trained in med schools to find commonly occuring diseases, not rare ones.  Lupus is not rare but still not that common and not easy to diagnose.  I had telltale symptoms, low platelets and mild anemia, for 15 years or more with no other symptoms.  Until my platelets dropped even lower 4 years ago none of the doctors even thought about lupus.
 
Others have given you good advice about listing all symptoms and bring any test results you have.  Be your own advocate and manage the doctor.  Ask lots of questions.  Ask what's next?  Obviously something is wrong so you might have to push your docs.  My diagnosis was made by a hematologist who eliminated everything else that could be producing low platelets.  He guessed lupus and 2 months later I became symptomatic and within a couple of more months got a positive diagnosis.  My rheumy guessed I had something more and 2 months after that diagnosed MCTD.
 
Hope you find an answer and get treatment to control whatever you have.
 
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
 
 


SuperGirl413
Regular Member


Date Joined Apr 2007
Total Posts : 22
   Posted 12/16/2008 5:22 PM (GMT -6)   
Thanks Bill and Ginny,

I am going to continue to try to get an early appointment but so far the 23rd stands firm.

I hope that I don't have to become gravely ill for them to figure out what's going on with my body. All the advice that you have been giving me in this forum is of great comfort and assistance.

Nicole
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