Frustrated with my Rheumy

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Regular Member

Date Joined Nov 2008
Total Posts : 106
   Posted 8/6/2009 11:38 PM (GMT -6)   

Went to my rheumy today and was told I don’t have an AI at all even though while on prednisone and plaquenil my ANA went from 1:1280 to 1:320  not to mention I have felt much worse since I was taken off of them last Dec.    I’m so frustrated I was told I was fat and have sleep apnea and that has caused tennis elbows problems, rotator cuff problems, muscle weakness, Raynaud's phenomenon, sore hands, feet, hips, knees, ankles, wrists.   The +ANA, very high CRP and ESR mean nothing.   He recommends a vigorous exercise rehab.   I get wiped out and suffer from just cooking or doing the dishes is he kidding.   Oh and my rheumy doesn’t believe in Fibromyalgia as I learned from the Lupus clinic rheumy when I was referred there for a second opinion in April at which time she diagnosed me with Fibromyalgia.   How bad does it have to get to be diagnosed properly?  I guess if it gets bad enough they’ll be able to diagnose something.  I’m just hoping its not at the autopsy.


Sorry for the rant I’m just so mad and frustrated right now


Thanks for listening



DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, Fibro and all over tendonitis?????  
Life is what you make of it.  Just something I try to remind myself every day.

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 8/7/2009 9:16 AM (GMT -6)   

I am so sorry you are going through this. You have every right to be angry, being in
diagnosis limbo is horrible. It is frustrating to be put on meds for a limited time only to
be yanked off, put on something differant only to be yanked off again. You are the one
that ends up suffering.

I have read that many Docs fear giving a diagnosis of Fibromyalgia because they
believe it perpetuates the illness. They think they turn people into invalids. How many of
us suffer for years before we even see a doctor?

Are you able to find another Rheumy in your area? It is difficult to start over but if you
find someone who will treat your symptoms it will be worth it.

Good luck

 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements

Regular Member

Date Joined Jun 2009
Total Posts : 36
   Posted 8/7/2009 10:56 AM (GMT -6)   
bryan, I know how you feel. In the past 3 yrs I've been told I have tumid lupus, then to sle, then to I don't think you have lupus. ( and the last by just looking at me no blood work what so ever!) I don't know what is wrong with me but there is something wrong!

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 8/7/2009 1:53 PM (GMT -6)   
my advice, find a new rheumy. check with people in your area who have lupus and be willing to drive hours if you have to for a decent doctor. If you lived in the lower half of Michigan I have a wonderful doctor I could recommend.
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

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 8/7/2009 9:24 PM (GMT -6)   
You guys are making me very thankful for my Rhuemy.

I hope you are all able to find decent doctors.

Angel MJ
Regular Member

Date Joined May 2009
Total Posts : 36
   Posted 8/8/2009 4:43 PM (GMT -6)   
bryan hi ... (hi everyone else also) i think that you should be looking for the 3rd opinion - someone with a bit more medical ... loss for words ... ?insight? knowledge? ? sorry it is not coming to me ... point is that we should not let doctors with the 'bedside' manner of a donkey get to us! doctors are human just the same as patients and i think quite natural that not every doctor/patient will be the right match. so you say thanks doc and move on to the next one. might be easier when youv'e done it a few times. there are good ones out there sometimes we just have to look a little harder than other people.

in my non-medical opinion the plaq did do something as your ANA dropped - is that not indicative that the activity is lower?
aaaarg gets me real bothered that some docs are so flippant! you unfurtanely are part of a growing club!
LFA has geographical listings of docs

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 8/8/2009 9:30 PM (GMT -6)   
Hey Bryan, yeah you need to shop around for a 3rd opinion.  For some (like me too), it takes a long time to get anywhere.  It's absolutely stupid.  We're here for you.  Whatever we can do to help, we'll sure try.  We've been where you are my friend.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 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, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums

Regular Member

Date Joined Nov 2008
Total Posts : 106
   Posted 8/10/2009 5:17 AM (GMT -6)   
Thanks everyone. I'm doing exactly what you've suggested get a 3rd opinion. I got a hold of my cousin (who has the same symptoms as I do and has been diagnosed with MCTD & Fibro) so I can get referred to her rheumy by my GP. I also set an appoint to see the Lupus clinic rheumy again. Hopefully I'll get some answers.

Thanks again for your support

DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, Fibro and all over tendonitis?????  
Life is what you make of it.  Just something I try to remind myself every day.

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 8/11/2009 9:17 PM (GMT -6)   
I hope things go well with your doctor. If that rheumie didn't believe you have autoimmune disease he should have tested you for lyme and every possible infectious organism because obviously, from your bloodwork and health, something is wrong. (I was told the same thing for 15 years when I have lost half my skin pigment and have dark patches and obvious signs of lupus--people on the street would stop me and tell me to go to the doc andtell them to test me for lupus, my malar rash is so classic). Mayo was reluctant to diagnose me with any autoimmune disease because they want to focus deeper on possible causes like unresolved infections. That did nothing for my daily life and to get through the day. They decided I definitely had autoimmune disease without question when They found huge lymph nodes lit up on my PET scan after they told me I definitely did NOT have cancer (with absolutely no testingto support them).

For some docs, it makes them feel big to do this, to go against the grain and to make pronouncements. I did realize one thing, that while I prayed for myself and everyone else who was sick, I did not pray for the doctors. Praying for them seems to help my attitude. I'm very jaded about medicine.

I don't know where you live but I have an excellent male rheumie who is very very good and would get you back under control. Why stop the plaquenil? I don't get that one. I'll probably be on that forever. I hope your new doc helps and maybe your cousin can go with you. I am overweight, and nowadays it has become politically correct to be downright cruel to anyone overweight. Most people who are drastically overweight have medical problems that preceded their weight gain, inmy case, my liver. I argue with docs about it all day long. ONly the liver transplant guys understand really why I have weight and have lost so much muscle and how hard it is for meto lose any weight with a malfunctioning liver and endocrine problems and rounds ofsteroids.

I feel for you and hope things work out.
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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