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Discussion Starter · #1 ·
I went to get a second opinion from another Rheumy today. He originally said that he didn't think it is Lupus till he asked me about miscarriages. I have had 3. He then said it may be something Autoimmune, because sometimes women with Lupus have a history of Lupus....But not saying that I had it.
I went on to explaining the rash I had goten on my face and neck and how the other Rheumy couldn't believe that it was form the sun cause I do live in Florida...And I guess how come the reaction now not before. That's when I explained that I have a son with Autism and mostly stayed inside, he then said...Well then...Having a child with Autism may be the reason why I have miscarried in the past...Attributing genetics for the reasoning of the miscarriages...Is he kidding me? :mad:
I also explained that I sometimes can't walk due to the excritiating pain in my ankles and swelling...He said maybe my heart is not strong enough....But yet...doesn;t send me to get my heart tested...I don't understand. I'm am so through with some of these doctors. I also forgot to mention that he thinks I shouldn't take th ePlaquenil since I don't have Lupus....Or should I say since he doesn't think I have Lupus. Sorry...Just had to rant.
 

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Oh, how frustrating!!! :angry: Your story makes me angry, too! What is it with so many doctors??? I wish that there was a way to get a refund for a useless office visit. Sorry you had to go through that.

1tiredmama
 

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They come in all shapes and sizes. My 1st office visit at my 4th rumey told me that i had fibromialisia and not lupus back in 2007 (been in pain since 2003). no blood test but a diag just from a physical exam. Needless to say, he changed his diag 4 weeks later during a follow up and after a blood test. YUP YOU HAVE LUPUS along with blah blah blah! It's hard to find the docs that are not only in it for the money. I have been blessed with caring docs but I also tell them in the beginning and they see that im not an idiot. I will not waste their time and expect them to not waste mine. My time is precious to me. Please do not get discouraged. Just dealing with this lupus life is hard enough...i know! But you can't allow one doc to get under your skin. Tell the docs to take blood tests if you don't already have past records with you for their review. I am at my 4th rumey and will be going to the mayo in AZ on Sunday....i won't stop. Please don't give up.
 

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:hug:

It sounds like a most unsatisfactory appointment.

all I can say is that although you may feel like giving up right now, you really mustn't.

You do need to make sure though, if you're going to see another rheumy that you see an auto-immune specialist. The thing is, no-one can really tell you what's going on until you do see someone competent so whether it is lupus or not, at least it needs to be looked into properly and explained properly :mad:

Katharine
 

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So sorry that you had such a waste of space treating you... it is sad in this day and age how many quacks are still out there. Sounds as if he hasn't got a clue and you should never bother with him again.... what did your bloods show , or did he actually do any investigations whatsoever? Give yourself a little time to regroup then go on the attack again; find somebody who knows about auto immune stuff (yes I know all Rheumys should....). You have far superior knowledge of your health than anybody else, so feel you deserve an answer and don't let the poor performing Drs put you off finding a good team player in your fight against your ill health. I wish you well on your quest.
Claire X
 

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Hello, I know this is frustrating and you deserve far better - but it isn't surprising. You are going to have to be strong and stick with it until you find a good Specialist. Maybe someone here can recommend one. If you have a child with Autism I am sure you do anything to fight their corner,so you are strong enough to fight for your own health. We are all here to help you.
x Lola
 

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Wow. I wonder if this a Florida doctor thing, because the first rheumy I went to in Jacksonville told me I was not sick, I would never become sick, it was all in my head, so I should go home and relax. I have since been diagnosed with UCTD and have been on treatment for nearly two years.

One thing to remember about Florida is that, thanks to our snowbird population, most rheumies here are experts in arthritis. The second rheumy I saw had 2 patients with UCTD and only a handful with other autoimmune diseases.

Are you close enough to Jacksonville to make a trip to the Mayo Clinic possible? They don't accept my insurance, so I haven't been there personally, but they have a fabulous reputation.

Terri
 

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oh no lets screamm out at that appointment sounds horrid and to me i would again seek another opionion even if meant travelling to better hospital for it and 1 that speclised in lupus.

what disgrace.
u must be so anoyed,frustrated and so much more gentle hugs.
lv countrylass:(
 

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Sorry your appointment was so bad but your not alone, we have all dealt with these kinds of doctors.

I hope you can get on with finding another doctor who will be worth your time.

There are good doctors out there but you just have to find them.

Good luck as you move ahead and don't give up.:wink2:
 

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You are not alone! I can't tell you how many doctors I've seen in the past year that I have wondered how in the world they graduated from medical school! It seems like I always leave the doctor thinking ok.... I have HAD it with the entire medical community! For real this time! But of course that doesn't last long because a week later I'll need another doctor's appointment.

I just found out today that the rheumatologist I was seeing has settled 2 medical malpractice lawsuits and is not even a certified rheumatologist! He's just certified to practice internal medicine! I'm thinking...is that even legal??? So I asked around and apparently YES it is legal to say you are a rheumatologist even if you are not certified to be one. Cool, medical community. Real cool. You got me again, with your antics.

So I guess it's back to square one for both of us. I wish you luck! And I hope you don't go back to either of those jerks. Helping them make a living keeps the bad doctors out there practicing, so that other people looking for a diagnosis are just as delayed by the doctors' incompetence as we have been. Don't be afraid to ask to have specific tests done, either! Or to ask why he did or didn't test for something or do something. I've recently learned that if a doctor doesn't do something I think he should have done, it's because I let him get away with not doing it. Getting a diagnosis is MY responsibility, and if I keep quiet I'm going to be the one who suffers..literally. Best of luck to you!!!!
 

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Discussion Starter · #11 ·
Hi, thanks all for listening and supporting me. I have had all the blood word done. The only thing that came back Positive was the ANA test. It has been done twice in 2 months. Both times the test was positive. The first was 1:640 Speckled and Homogenous, the second was 1:320 Speckled. ( I am almost positive w/o looking at paperwork...lol)
It is very frustrating. He also said that he can only look at what info. he has in front of him....So I asked...Doesn't my history count?....He had no answer. What an unprofessional Dr. he was.
I will keep going and try to find the right Rheumy. I will also bring my pics with me, which I had forgotten.:sad:
Then I explained, to the Dr. about the white bumps on my back. Some are raised, some are not, and some are itchy. He said that with age (mind you...I'm only 35) skin color can change. What is he nuts??? I know that can happen, just NOT at my age. Never heard of that at my age.
When all is said and done...I hope I don't have Lupus....But unfortunately , I think I probably do. I just know that something isn't right and usually I am right when it comes to my body.
I'm sorry if I was ranting again, I didn't have such a great day today either.
 

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I know exactly how you feel ...

I am having similar problems getting a correct diagnosis . I can't believe your doctor attributed a miscarriage to genetics. Wow ! You must have wanted to run screaming out of the office .

My GP has been no help , just keeps telling me I am stressed out and depressed (well now I am...) and last visit would not even check a swollen lymph node under my arm, but told me I would have to make another appointment for that . She would not even give me the numbers for my lab tests , just said one of them was elevated but nothing to worry about.

Then she sat with her arms folded and told me there really wasn't anything else she could help me with , and that if I wanted to schedule a new appointment for a well woman checkup , I could at the reception counter. I started crying in her office... and she pointed at me and saie, see... depression . I raised my voice a little and said , "I feel like you are not helping me " and her only reply was to tell me she had a full schedule of people to help back to back all day and was busy.

Meanwhile my face is broken out in a rash , swelled up , along with my ankles and wrists, I have a fever that lasts for days before it goes away then comes back , and I have no muscle strength or will to get up in the morning, and have an "allergic" reaction to everything I eat or come in contact with. And I have to wear sunglasses to go outside , or even into a store with bright lights .

The only person I feel is in my corner is my eye doctor . He looked at the rash , eye infection, blood tests and other list of symptoms etc. and said I probably have lupus and should definately go to a specialist. He gave me lots of hope, some diet information and encouragement , so now I feel like I have some answers at last.

Hang in there, everyone who has symptoms they can't explain that don't go away. It might seem like an allergy one day , the flu the next , a cold the next or even like you are suddenly 90 years old and have no strength .
 

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Discussion Starter · #13 ·
Thanks for all your support from all of you. I know that this is not an easy road to walk. I did want to leave the doctors office yelling, but I didn't. :eek: I left crying, which was hard for me since I was crying in front of my then 3 y/o and hubby. I don't like to feel that way, especially in front of my children. Well, that was that day and today is a new day. I am going to another Rheumy, probably in a few weeks or so. I am just taking a little time off to absorb it all. I am very grateful to have found this board with all of you great people. Thanks for being there and giving me such a warm welcome.:)
 

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hi sorry to see what rotten time u both having,pray u get results with a fab next rheumy appointment.
mines november lol.

more i read on here more lucky i feel ym rheumy is 1 who has actually suggested he may made mistake and i may well have lupus not ra or both.
proceded to do through test and bloods,xrays the lot.
my father had lupus,his gran had it and lots other auto immune bots in out family.


i was told inflammatory arthritis age 18 then treated as ra.
notes lost so rediagnsoed after 8 years as sero negative ra.

1 year and half on may made mistake lupus investiagtions.

constant butterfly rash face,muscle pains,heart flutters,chest pain,joint pain constant ra level infallamtion and crp aswell as esr.
whcih indiactes raa swell as lupus lol.
its a battle pray for stregth and for qucik answer for u.

lv countrylass gentle hugs to u both
 
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