Recently Diagnosed by Rheumy but PCP doesn't think so?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

BoxermamaD
New Member


Date Joined May 2014
Total Posts : 2
   Posted 6/7/2014 11:46 AM (GMT -6)   
Hi All,

I've been lurking for a while trying to figure out if my diagnosis from my rhuematologist is correct. Any input would be appreciated. I have been feeling unwell for about 2 years now. More than my normal fibromyalgia. Excessive fatigue and joint and muscle pain. I have hair loss and recently my bottom lip has become chronically swollen. In Sept 2012 I developed and enlarged submandibular gland and what was diagnosed as Sjogren's but lip biopsy was negative for Sjogen's but showed "mild chronic inflamation".

My recent bloodwork shows ANA 1:640 Nucleolar - It has been 1:320 Nucleolar since October 2012 other lupus tests normal.

I am anemic and have been since June 2011, no vitamins or iron supplements can get red counts in the correct range. Not terrible but never in correct range.

C3 has been low on two previous occassions but is currently in the normal range

White count currently normal but was low on one previous occassion

ESR always normal

C Reactive protein currently normal but was at .8 on one previous occassion

I have terrible memory, concentration and depression problems that have been diagnosed by neuropsychiatric testing

I have raynauds that is reactive to cold but also to stress also intermittent swelling of hands and feet

I had been suffering with terrible leg pains that neurologist said was a rheumatology issue and rheumatologist has diagnosed as hip bursitis.

At my most recent visit the rheum gave me a medrol pack which helped me a great deal. I was even able to breathe better. I had complained of lack of air but it was diagnosed as anxiety. Now rheum says it is most likely chest wall swelling.

Since the medrol helped so much the rheumy said it is lupus and put me on plaquenil 200mg twice per day. I have been on it for a month and I think it may be helping some. I don't think I am quite as exhausted and the bursitis and joint and muscle pains are not as extreme. My PCP said steroids would always make you feel better and help but she does not think it's lupus or fibro but something else but she doesn't know what. I also have gastritis, diverticulosis, IBS, a moderate hyatal hernia and moderate osteoarthritis in my thoracic spine.

I have also been suffereing from more headaches than my usual migraines and recently there have been white matter hyperintensities noted on my brain mri that were not there in any previous mri but neuro thinks they are due to migraines. In addition to more headaches and migraines I have had a few episodes of swelling of the lymph node on the back of my head on the same side that the sub-mandibular gland is enlarged. Both glands reduced in size with the steroid. Oh and also have seen an ear specialist for chronic sharp ear pain on that side but they can't find anything wrong in the ear.

I am 49 years old and feel like I have seriously started to fall apart over the last 2-3 years and I have gained 30 pounds in that time also:( I used to be able to walk 3 miles daily, now I can't even work every day.

Any thoughts would be appreciated.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 6/7/2014 6:27 PM (GMT -6)   
Your PCP should stcick to his or her specialty and let your rheumatologist practice his/her specialty. If my PCP were contradicting my rheumy's diagnosis, I would run find another PCP.
SLE, fibro, renauds, restless leg?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 6/7/2014 7:15 PM (GMT -6)   
You say you are taking plaquenil but then the rest of the paragraph talks about what prednisone would do? Are you taking plaquneil, predisone, or both?

I'm with PattyLatty - the pcp should stick to general medicine and let the rheumy deal with the auto-immune, fibro, lupus-symptoms, and such. The rheumy should be the leader now.

I only see my pcp for an annual overall physical, everything else I take to the rheumy.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/7/2014 10:41 PM (GMT -6)   
I agree, the pcp is wrong to change your diagnosis. The rhuemy has two years more of speciality education in rheumatology than he has.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

BoxermamaD
New Member


Date Joined May 2014
Total Posts : 2
   Posted 6/8/2014 7:31 AM (GMT -6)   
Sorry for the ramble but I just can't get my head around the PCP wanting to undiagnose me and stop the plaquenil.

At my last rheumy visit in April the Rheumy said that she thought that the increase in the ANA, the hip bursitis and lip swelling really supported the lupus diagnosis(among other things) and that she was prescribing a medrol pak (5 day) to see if it would have any effect and if I responded well to the medrol it would confirm Lupus to her because medrol would not help fibro. So when the medrol helped after only two doses, she started me on plaquenil while finishing the medrol pak. So I have been on plaquenil for a little over a month.

The PCP said she does not think it's Lupus because Lupus is a disease of inflammation and my c-reactive protein level and ESR levels do not support that. Does everyone that has Lupus have high levels of either always?

I am going to continue with Rheumy and plaquenil as I believe she is correct and I'm pretty sure the Plaquenil has already reduced the muscle and joint pain a bit.

I just don't know what the PCP is looking for. I think she really thought it may be MS and that's why she sent me back to neuro after first neuro said fibro and did no tests. Recent neuro did spinal tap and lyme tests and both were negative and said there is no primary neurology issue.

I will not question the Rheumy but she will see the notes from PCP on my chart as this is a combined university practice. Should be interesting, thanks for the thoughts:)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/8/2014 5:48 PM (GMT -6)   
My bloodwork changes only during flares.
My c3 & c4 has most of the time been in the normal range but have slowly changed ove the last years.

You will feel a lot better once the plaquenil reaches the six month level.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, July 21, 2018 12:36 PM (GMT -6)
There are a total of 2,983,959 posts in 327,164 threads.
View Active Threads


Who's Online
This forum has 161962 registered members. Please welcome our newest member, blfinish.
367 Guest(s), 7 Registered Member(s) are currently online.  Details
netsavy006, sebreg, Mik1999, Tburd, RobLee, MK1965, Tall Allen