Lupus Message Boards
Register Latest Topics
 
 
 


Reply
  Author   Comment  
Dmgentry79

Junior Member
Registered:
Posts: 14
 #1 
Hello all! I am new here... My issues started back in May of last year. First just as GI related symptoms and then slowly progressed to joint and muscle pain, constant low grade fevers, fingers and toes turning white, pins and needles in my legs and feet, itching and skin irritation, dry mouth, hair falling out and debilitating exhaustion. I was first tested for colitis and Crohns when the GI stuff escalated and all that was found was extreme amounts of inflammation in my stomach, colon and upper GI tract. I've always had complex migraines but as these symptoms set in the migraines hit daily for some period of each day, as well. That's when I went back to my PCP and said I thought there was something greater than a GI issue causing all of this. She ran autoimmune testing along with food allergy tests and a Lyme disease titer. Lyme and allergy came back perfect but autoimmune came back positive and with a speckled titer of 1:640. Also inflammatory markers very high. She referred me to a rheumatologist. After waiting 3 1/2 weeks to see him, he made me repeat testing along with a panel and told me today that some of the tests are positive, some are negative so he can't conclusively diagnose me based on the titer and my symptoms. He was also very brash saying he thought I was mentally unstable because I cried in his office when he gave me the news he would no longer see me... I think any one would after dealing with this almost a year! He also kept focusing only on my leg pain and no other symptoms and harping on fibromyalgia and my need for pain meds. Needless to say I won't be back...

But my question is how many other people have been through similar experiences with doctors not willing to research and help? Is it worth getting a second opinion or should I just look into alternative medicine and natural methods of helping myself at this point? I feel very defeated and let down by the medical system on top of my daily symptoms and depressed mood.

A side note... Autoimmune is in my family history. My dad has RA and Sjogrens and my brother has a general lowered immune system which causes him to not be able to be exposed to illness or rebound like normal people. My brother however, stems from being born at 28 weeks gestation.
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,392
 #2 
Welcome.
It is certainly a hard and sometimes long road for a dx for many of us. Be careful of "shopping" for Rheumatolgists. Not sure what area you live in but try to find one that has other patients with AI issues. The main LFA page has links to get help finding docs.

__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Dmgentry79

Junior Member
Registered:
Posts: 14
 #3 
Thank you Robin... I will check out the LFA page and see what's on there. My insurance switched at the first of the year to an HMO so I have to go back to my PCP and get a new referral. I did no research prior, just went to who they made my appointment with. But now that I'm reading reviews on this practice it seems they are not very good.
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,392
 #4 
Best of luck. Keep us posted please!
__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
taffylinden

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 934
 #5 
Similar experience? Yes, ma'am! If you go to the thread "I'm Done" and go back to the first page, you'll see that I also saw an arrogant rheumatologist who only focused on one thing and didn't listen to me. I'd been so excited to find a rheumatologist specializing in lupus that I didn't read reviews, which, as with your rheum, were pretty bad. 

I can't get over that rheum telling you you're mentally unstable because you were crying. If he can't handle or understand human emotion, he should've become a car mechanic. You have the right to a rheumatologist who knows what he's doing and takes you seriously, as well as one who understands AI's. I can't believe this guy thought every test had to come back positive in order to give you a diagnosis. 

Hope you find a good doc soon!

Dolphin

Avatar / Picture

Active Member
Registered:
Posts: 50
 #6 
Yes. I had a horrible experience with last rheum. I have +ANA, + ENA. This doctor gave me only NSAIDS. When I starting having side effects from the NSAIDS, I was dismissed for "complaining and questioning the dr"  as I asked about different options. I was referred back to PCP.  I get plaqunil from pcp for arhitritis and it helps. Maybe u can get a dx of discoid lupus, arthritis, UCTD from a non rheum and start treatment. I think dermatologists are farily knowledgable about SLE due to all the skin manifestations, maybe they can do a biopsy if u have rash.    I did ressearch and found a new rheum and was finally able to set up a new appt. However, my appt got cancelled as my ANA is not in the thousands.

       I was referred to c a psychiatrist due to stress caused by the rheumatologist as I have cried in dr's office largely from pain and a little it from stress.   The psychiatrist took a look at pics and labs and agreed there was a problem and this was wrong.  The psychiatrist recommends a teaching hospitals/ university rheum's in major cities.  Good news is that they said my problem is not psychiatric which made me feel better and was more helpfull to me than any rheum's so far.

 Bottom line it is wrong for Rheum's to dimssiss a pt cuz they don't have the knowledge to come up with a dx and then blame it on the pt as being a "hypochondriac or unstable."  If lupus is truly the "great "imitator" then they should be willing to take a look at inconclusive results and long as the clinical picture is strong. If they say no Lupus, then fine but they should be able to suggest an alternative dx and others dr's to help the pt.  Ur ANA of 1:640 is high and desserves attention and with symptoms points to sometype of AI whether Lupus or not.
Mr. Bun

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 1,098
 #7 
yep.

The medical roller coaster ride is not fun.  I thought these Docs were supposed to "care" for patients.  Seems to me, when a patients' history gets a little too complicated for them and the dx is not a slam dunk......their best line of defense against their fragile ego is to make the patient feel inferior.

I don't have a rheumy at the moment.  well....I kinda do.....but she is too busy flirting with her residents to pay attention to little ol' me!  So I have told my GP (pcp) that I will not see her again.  Why would I continue to go to a rheumy, who after having had my nose cauterized, after serious hemorrhaging, told me to not pick my nose?  wow....those years of med school sure paid off for her!

Right now, i have my GP, dermatologist, neurologist, gastrologist and an orthopedic surgeon.  Between the five of them I get the care I need. My ex-rheumy is too busy hitting the lecture circuit and applying for government grants anyway.

It's disheartening at best, when you wait for months for a specialist appt.....only to have them brush you off like a piece of lint.

But keep trying DMgentry......you're not crazy.....you're sick.

Take care
Dmgentry79

Junior Member
Registered:
Posts: 14
 #8 
I wanted to thank you all for your kind replies! It helps IMMENSELY just knowing I'm not alone! As a single mom struggling to make it day to day... Sometimes I feel extremely secluded wading through all the symptoms and feelings. I try to push through for my kids and my job since I'm the only one providing. Yesterday was a hard day when I was made to feel so disheartened by the doctor and for lack of a better explanation, completely crazy and like I was overreacting... But I live in this body and know what I experience and how I feel. Every week it seems a new symptom is coming to light that I have to learn how to manage and navigate. I've made an appointment to go back to my PCP, I already see a neurologist on a quarterly basis and a chiropractor to help alleviate some of the joint pain and stiffness. I'm also looking into a nutritionist to assist with dietary changes that will aide in lessening inflammation and in choosing the correct vitamins and supplements.
But once again, thank you for sharing your own stories and comments! That more than anything is helpful right now to make me feel like I'm not in this alone and someone out there does understand the struggle in going through!
Mr. Bun

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 1,098
 #9 
Dmgentry79

Junior Member
Registered:
Posts: 14
 #10 
100% accurate Mr. Bun! ☺️
Dolphin

Avatar / Picture

Active Member
Registered:
Posts: 50
 #11 
Mr. BUN is right on !  I think if some rheums would go for a blood test they would have a BS titer of 1:1256 with an anti- sense pattern.  
taffylinden

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 934
 #12 
Ha! Thanks, Dolphin, for my too-true laugh of the day!
Previous Topic | Next Topic
Print
Reply

Quick Navigation: