View Full Version : Back to no Diagnosis if I listen to the Dr

06-22-2010, 09:12 AM
My new doctor (I have only seen her about 5 times) doesn't think I have lupus because now all of my blood tests are coming out normal (I have been taking plaq. and steroids for 8 months which has improved many of the milder symptoms). I do still show clotting issues (I clot way too quickly), I am having seizures that everyone is convinced haz nothing to do with the original issue (which they thought was Lupus) and everyone wants to watch every change in my blood work which they SHOULDN'T do because the meds change things.

I am so frustrated ! I switched doctors because I felt like I was not being listened to and I still feel that I am not getting the care I need. I don't want to come across as a doctor shopper but I need someone to figure out what is wrong so we can start working on getting it fixed or under control! When I have a flare or get the rash or the blisters or (fill in the blank) I laughing say that it is from the Lupus that I don't have. I laugh but it isn't funny. I am tired and weak and I just needed someone to tell me that I am not crazy. Heck, maybe you need to tell me that I am and tell me to shut up.

Any advice would be appreciated

06-22-2010, 10:28 AM
If doctor shopping is what you have to do to find a doctor who is willing to listen to you, believe you, and work with you on a treatment regimen....then, by all means, do doctor shop!
Your main concern is getting appropriate treatment so that you can manage your symptoms and maintain some form of a relatively normal life. Who cares what anyone else thinks about you changing doctors. They are not living with your disease, so their opinion carries no weight whatsoever.
If your doctor is so unaware as to not know that it is the medications that are bringing your blood tests into the normal range, then he/she is not the doctor that you need. At this point, a knowledgeable doctor should be talking about adjusting you meds to keep your test results normal and to continue to alleviate your symptoms. So, in short, yes continue to doctor shop until you find a doctor who works with you, not against you!

I wish you the very best
Peace and Blessings

06-22-2010, 12:03 PM
I can't add too much to what Saysusie has said, other than no, you are not crazy, and yes, you should go Dr. shopping until you find a good one.


06-22-2010, 07:11 PM
Thanks for the advice. I think ya'll are right. Today's newest test results show (new things... well new or newly tested) really low vit D, really high Factor IIIV and Factor IX (clotting too easily), low ALB and excessively high dopamine on top of seizures that no one can get under control. I feel like my body is betraying me and I know more than the doctors do!

Although I have been out of work since April 7th when I had a seizure at work today it became official that I am not going back. My insurance will be gone on July 2, 2010 and we are no closer to figuring getting me in order then we were in Nov. My life has become something I never dreamed it would be and I feel like I am waiting on people that don't care to figure out why. I usually try to be upbeat but today... not so much.

I will go find a new doctor soon

06-23-2010, 04:48 AM
The fact that you can't go back to work and you are loosing your health insurance, makes everything
much more complicated.
I hope that everything works out for you.
Most of us at one time have felt, like you, that we are crazy. But we know, we are not.
Wishing you all the best.


06-23-2010, 05:50 AM
Thanks to all of you. I feel much better today (emotionally). I was on a pity party yesterday but it is over now and we are back to trying to find solutions. I do appreciate the input. I am now on a search for a new doctor! who cares what others think!!

06-23-2010, 11:29 AM
Good, you sound better. Explore your options and go for it; above all find a doctor who cares. mine dithers about the diagnosis but she keeps treating me.

Cyber hugs to you.


06-24-2010, 03:29 PM
Are you seeing a neuro, tgal? Seizures are nothing to ignore. Every time you "seize", the potential for injury is there, as is the potential for scarring. Have they done an MRI? Have they attempted to increase/change your seizure med?

06-24-2010, 04:24 PM
Hi Jmail,

Yes, I am seeing a neuro. I am seeing everyone. I am on seizure meds but they aren't really working. I have had an MRI and it appears to be OK. I had a 20 min EEG that they said was OK and that I did fine while sleeping which is funny because I never slept and she even asked me if I slept and when I said no she said "I didn't think so". My neuro moved and I am having to change but yes, I have one of every kind of doctor almost.

Thanks for asking. All input is appreciated

06-28-2010, 11:38 AM
... I had a 20 min EEG that they said was OK ...
My wife does brainwave studies for work (REEGT). It shouldn't be done in only 20 minutes, but rather more like 60 minutes minimum. They need to do a proper EEG on you, maybe even attempting to induce a siezure in one of several ways (hyperventilate, photostymulus, etc)... There's also 24 hour and longer monitor tests they could try. Hopefully, a new neuro will do you better. If siezure meds aren't controlling the siezures, then you're either not having siezures, or they've got you on the wrong dose or need to change the med(s). Not to scare you our of your wits about siezures, but they aren't to be "toyed" with. We're praying for you.