My mom finally getting lupus diagnosis

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 1/25/2009 10:04 PM (GMT -7)   
After bugging my mom for about two years now to get tested for lupus, she got sick enough she finally remembered to ask the doc to test her. Even after months on Entocort, she still had a high ANA. I knew she would. She's allergic to everything. She has something called Microscopic Colitis, which is supposedly colitis only able to be seen under a microscope. I thought it was all like that. I don't know. They are sending her to a lupus specialist now that her immune system is so hopelessly broken. If only they had done this earlier.  She has been so sick, I'm just glad there may be some help for her to get her life back and feel better. She's had all the typical stuff, pleurisy, gi, liver, bladder, possibly kidneys and heart now, she is really puffy, and diabetes like condition and an inoperable pancreatic tumor that seems to be benign, she's had it for years now and it hasn't changed or caused major problems. I'm so glad that she may be able to get on something besides steroids for a while, even plaquenil because she keeps getting sick and has zero energy. She has bad neuropathy too.
 
I hope that she gets a good doc who looks at everything and figures out what is wrong so she can get better and we can know what is going on. Not only do I have problems but more importantly, my kids and my sister's kids have problems.
 
I really want her to get a TB test too. I know she doesn't want to get one because she doesn't want to take the medicine beause I've had trouble on it. She wouldn't though because her liver isn't bad like mine. My sister also had TB and went through the medicine. So there's two in close family. She needs to get tested. Anyway, I asked her if she'd been tested recently and she said "yes" and I asked her when and she said, "Oh, about 1973..." That's my mom. She's sweet, but I think she's scared. At least she got the lupus part done. I'm so proud of her. She has been so weak and foggy. And she's been on steroids for months now because her gi stuff just won't let up.
 
well, thanks for listening. I love you all here and wish you the best. I just don't want to lose my mom, I love her so much and she is just so sick, one thing after the other. She deserves a break.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


PeriwinkleButterfly
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/26/2009 11:34 AM (GMT -7)   

that's great! I wish it was so easy to get a diagnosis... I think I have Lupus, my grandma has it and my sympoms are similar. And getting worse.

I could sleep all day. Maybe just forever! I have about 3 other symptoms...

Then, over the past 2 months I have lost over half of my hair. Lukily I have very thick hair, no one has noticed but me and my husband. I wish my doctor would listen to me and get me tested. I will be switching doctors really soon.

i just don't know what to look for in a doctor. Mine is a wait and see type. Not aggressive about treatments at all... I broke my arm, fractured the wrist, and he just said something like 'if it still hurts in the next week or two, lets xray it.' I was so shocked! I came in and paid money to see him. Wouldn't do that if I was just fine!
 
So, yeah, guess I better just take my chances and see about another doctor :-)
 
Thanks for the time :) -A

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 1/26/2009 12:46 PM (GMT -7)   
Remember that a lupus-aware rheumatologist is the correct doctor to diagnios lupus and other auto-immune diseases -- regular "primary care" doctors just don't have the right training & experiance to id it.

Best way to get to the right rheumy is to check lupus.org for the chapter nearest you -- then see what rhumies are active on their board of directors -- those are the folks who are interested in lupus and keep up to date with treatments & options.

Hope you get some appropriate treatment soon.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 6mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex

Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

"Life is far too important to be taken seriously." –Oscar Wilde, 1982

 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/26/2009 2:51 PM (GMT -7)   
Periwinkle, I suggest a quick change in doctors because I am sorry but waiting to xray a broken wrist can end up causing serious harm. Your doctor sounds like he doesn't believe you when you say you hurt. Even when my doctors were at their worst none of them ignored something that could have been broken bones except my spine but I couldn't tell them about traumatic back injuries cause my ex always went to the doctor with me and never let me see the doctor alone- not even for my pap. My ex is the reason I have compression fractures so he had a vested interest in seeing to it my doctors didn't get honest answers to abuse questions.

Marji, I am so sorry your mom is so ill. I know it is nice to finally have testing done but I also understand it would be better if it hadn't been necessary.
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, cozar


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/26/2009 7:21 PM (GMT -7)   
Marji, I am sorry to hear of your mom's health problems, maybe she is on the road to getting proper dx's and treatment plan and she will feel better soon! You and your family are in my thoughts and prayers. Please keep us updated on how she is improving! Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


Buddyadam
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/29/2009 7:18 AM (GMT -7)   
I can say for this that change your doctor for your mom's treatment.

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 1/30/2009 2:20 PM (GMT -7)   
Well. now her primary care docs on a return visit to get the referral seem to have amnesia and now say her labs, while just above normal--even inflammatory markers--have now decided they WILL NOT refer her to a rheumatologist. They seem to have forgotten that her levels were elevated during months on Entocort for colitis, so imagine what theyd be normally. They won't even refer her for her bad arthritis. I don't know whether the rheumie refused to see her, or the docs just changed their mind. I told her to try to go. She really needs it. She can't stay on steroids forever and her immune system is going. I wish she had better care, but she won't leave her primary care docs and they have not helped her at all.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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