Really Frustrated With Rheumy and lab results---Help!

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Sunshine1960
Regular Member


Date Joined May 2008
Total Posts : 37
   Posted Yesterday 5:25 PM (GMT -7)   
Finally had an appointment with a Rheumatologist 2 weeks ago, got test results today.  Before today my Anti Double Stranded DNA went from 5 to 9 to 18....from indeterminent to positive.  They did an ANA back in the spring, it was negative. 
Now test results are as follows:
 
DNA (DS) Antibody .....  5 (so back to indeterminate--but we know these fluctuate
Anti SS-b/LA (Sjogren's AB) ....-1.0 Neg AI
Anti SS-A/RO (Sjogren's AB) ....-1.0 Neg AI
C-Reactive Protein...-0.2
                         C3   107
                         C4   24.8
Antinuclear ABS 1:40 Speckled
Histone AB   -1.0 (Negative)
Thyroid Peroxidase AB:  -10     (Negative for Hasimoto's)
 
So...the DNA and the ANA both came back positive, a low positive.....but positive.
 
Doc says the ANA was really low.....and the Anti DNA really low....and that there is no chance of me having any type of connective tissue disorder....including Lupus:
Here are the symptoms:
 
Rash, itchy, scaly
light sensitive
extreme fatigue
joint aches -arthritis in thumbs, fingers, hips, (both sides)
numbness and tingling in foot
sore bottoms of feet in morning upon waking
chest pain between ribs in back upon deep breathe and sneezing
shortness of breath
I'm sure I'm forgetting something here.....but, you get the basic ideas.
 
I do have Hypothyroidism, Raynauds, IBS.
 
This Rheumatologists insisted when I went for my first visit two weeks ago that I had Hashimoto's, and didn't have Raynauds....
He told me differently this time.....
 
Am very frustrated, have been trying to get to the bottom of this for close to a year now, and am really tired of the doctors playing guessing games.  Asked the Rheumy today what his opinion of what is going on with me and he flat out said, I Don't Know.  Told me my symptoms bored doctors like him..... I pretty much tuned him out after he told me that my positive (although low positive) results didn't really mean anything ......
Told me to come back if I felt differently in the future!!!! You can bet I won't be going back to him EVER.....
Thanks for listening...any advice, opinions, etc would be very much welcomed!

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted Yesterday 6:06 PM (GMT -7)   
Hi Sunshine,
 
I can totally understand that you would never ever want to go back to that rheumy!  What a jerk.
 
Well, your labs are fairly unremarkable. That low positive ANA/DNA is so common in the general population. If it was 1:320 or higher, your rheumy might be looking at things more.
 
Do you have an absolute diagnosis of arthritis in your thumbs fingers and hips?  Or is "arthritis type" pain that you have?  What test diagnosed you if you do have it?
 
These symptoms you mentioned are very common in Fibromyalgia. The foot issues are HUGE in Fibro. The reason I asked about the positive arthritis diagnosis is that in Fibro, it can feel like joint pain, but what is really the issue is that the muscles, tendons and ligaments surrounding the joints are what is causing all the pain. There is no arthritis or joint damage at all. Raynauds is also common in Fibro.  
Rash, itchy, scaly
light sensitive
extreme fatigue
joint aches -arthritis in thumbs, fingers, hips, (both sides)
numbness and tingling in foot
sore bottoms of feet in morning upon waking
chest pain between ribs in back upon deep breathe and sneezing
 
I'm not saying you have Fibro.  I'm not a doctor!  But, it might be worth asking a different rheumy about.  There are no blood tests to diagnose Fibro.  Only symptoms and a physical exam to look for "tender points".  I would definitely get another opinion from a different rheumy. It took me almost a decade to finally get a diagnosis.  Only because I kept seeing morons who wouldn't take me seriously, like so many of us here have experienced.  It's really frustrating.
 
I hope this has helped you in some way!  Keep plugging along.  Your efforts will pay off,
 
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


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted Yesterday 6:45 PM (GMT -7)   
Hi Sunshine, Ginny has given you some great advise, you can also take a look at the criteria list doctors use to help them dx lupus. If you have 4 of 11 they will consider it.

www.lupus.org/education/topics/outcome.html (towards the end of the page)

Remember, lupus is a disease of 1000 faces, it's very hard to dx and no two people have the same exact symptoms, it effects us differently. The doctors need to get an accurate family history of autoimmune diseases', your symptoms, lab results, etc and it can still take years to get an accurate diagnosis. I pray you get some answers soon! Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
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)

Post Edited (jhmom) : 12/8/2008 6:48:51 PM (GMT-7)


Sunshine1960
Regular Member


Date Joined May 2008
Total Posts : 37
   Posted Today 7:14 AM (GMT -7)   
Hi there, thanks for the advice!
 
My doc never did any testing for arthritis, just examined me and said that is what it was....the thumbs, it's the joints where the thumbs meet the wrists, and the fingers, it's the knuckles, and the hips, it's the joints!  
 
the DNA was 18 last month...so that fluctuated.
A couple of other things I forgot:  blood in urine on two test, pleurisy (spelling), actually diagnosed by the Rheumy....not with testing, just on info given to him.....
 
Had spirometry done with pulmonary function tests, showed restriction, did nebulizer, didn't help much.....both primary care doc and Rheumy ruled out asthma...
 
They are at a loss....they call me a conundrum!!!
 
I will wait a while and seek a new Rheumy, maybe a pulmonologists, had stress echo done last week...it was normal, thank goodnes..   
 
I have to wonder if the thyroid is setting things off, docs say NO....or could having Lyme disease 4 years in a row have done any of this, had Erlichiosis as well...another tick thing.....
 
No one seems to want to take it seriously.....or connect anything.  Hmmmmm, wonder if growing up across the sound from a nuclear power plant has anything to do with it all...and the fact that that power plant is actually in my back yard now (I moved...it didn't!)
 
Any other suggestions/knowledge, anything....I really appreciate it.
 
 

Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted Today 10:02 AM (GMT -7)   

Hey Sunshine,

You have already gotten more advice than I am able to give to you.  But I am sympathetic to the problems that you are having.  And I am hoping things will be better for you in the future.

Hester


Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted Today 1:57 PM (GMT -7)   
I'm sorry you are going through so much of the frustration that goes along with trying to get an accurate diagnosis. Like others have said, there are a lot of illnesses that share similar symptoms and that's why it can take so long sometimes to get a diagnosis. I was like you and initially had a low positive ANA and a list of symptoms. The first rheumy diagnosed me with fibro and I went along with it until I kept getting sicker and sicker and all along my gut was telling me that I didn't have fibro, that it was something else. Almost 3 years later on my first appointment with a new rheumy (my 3rd one) I was finally diagnosed and started on the right meds. I always tell people to trust your instincts because you are the one who lives in your body. Also, I was told by my current rheumy that a positive ANA is a positive ANA and the only time it should be disregarded is if you don't have any symptoms. I know some docs put more stock in the "numbers" and what they see on paper and some docs look at the bigger picture.

Hang in there and know that many of us have shared in your frustration.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Sunshine1960
Regular Member


Date Joined May 2008
Total Posts : 37
   Posted Today 2:24 PM (GMT -7)   
Thanks for all the advice and reassurance....
 
You are correct, we are the ones who live in our bodies, and we know when something just isn't right.  The Rheumy was definately all about numbers.  Thyroid docs are the same way, if your results are in the "normal" range, they won't do anything different for you.  But, their normal range and your own may be different, as well as what the lab's normal range is.  I say all this because I just did all that again, and it's "within normal range". I requested the re-checking because I spent most of my summer building up my energy levels again, by doing the bicycling merit badge with my 12 year old....we did a few 10 milers, 15 milers, 25 milers (one in the mountains in Bar Harbor Maine), and a 50 miler in October out on Cape Cod! I had tons of energy for that.  But....walking 1 1/2 miles a day at lunch on fairly flat surfaces kills me...the shortness of breath.  I exercise each morning with Qi Gong, another 7 min workout, and core rhythms.....that one leaves me a bit breathless.  So...I wondered if the fatigue and shortness of breath was from the thyroid.....because with following a strict anti-inflammatory zone diet, and tons of water, and all that exercise.....I lost a total of 7 pounds.  Anyone else would have lost probably a good 30 pounds.  I asked the doc about that...she said it was probably genetics.....UGH.
 
Anyway, I said I'd fill in more symptons as I remember them....
another that I forgot was the easy bruising....really easy brusing.
Now...none of this has happened overnight, a lot of the symptoms have come on more frequently over the last year.  (work in a building with black mold in the duct work above my desk....doc says it isn't from that!)  I have had sypmtons for probably almost 10 years.  No one ever checked into any of it, except a few years back they checked for MS.  Thank goodness it isn;t that. 
 
So, I'll hang in there.  Actually have to head to Yale this evening for MRI of breast.  They found a spot on Mamo, redid it two more times, then had 3 more people come in a do an ultrasound.  So.. hopefully this shows a big old NOTHING THERE!!!!!   That would be the best scenario!
Okay, long winded, sorry.  Everybody, thanks again, and have a wonderful evening.
 
 

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