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laura.shella
09-25-2010, 03:55 PM
For the last two years I have been having severe headaches, zoning out spells, increased tiredness, increased joint pain, hairloss and so on. (all the normal Lupus symptoms) My Rheumotologist sent me to a Neurologist for the headaches, not addressing my joint pain and the other issues saying that my weight is the issue, even though I have lost about 20 pounds. I am over weight due to all of the medication I have been on. When I tried to point out to him that I understood that while my weight probably didnt help the issue, I didnt think it was the reason for the pain. He then told me I was making a career out of coming to the doctor. I told me I only come when he told me to come back. I saw the neurologist and he tried some medication. It didnt help. He sent me to see another neurologist that specializes in seizure and he gave me some medication that got rid of the "zoning out" spells. My problem is the 1st neurologist is still trying to get rid of the headaches. He cant figure out if they are related to my lupus or not. My rhuemotologist is not interested in helping me. I think I need a second opinion. Any suggestion for North Central Forida?? Sorry for being so wordy.

tgal
09-25-2010, 08:03 PM
I get so mad when I hear these stories. Find another doctor fast! Find one that will listen to you and treat you with respect. I put on a lot of weight when I got sick and even more because of meds. I had a doctor tell me that my breathing issue was because of weight. Another doctor I went to said "did you tell him that even healthy fat people can breathe?" LOL. That doctor said "yes, you have put on weight but the breathing problems started before that. Ignore the idiot and find a new one". I did just that.

Remember, these people work for you. You hired them and you can fire them too! Stand up for yourself. You know your body better than they do. If one is not listening then there is nothing wrong with going somewhere else!

slim
09-25-2010, 08:55 PM
Hi since you are in fl i have a good rheumy me for you. His name is Dr. marcos maldonado but he is in south fl. let me know if this helped . Slim

Islablue
09-27-2010, 09:04 PM
I hate to hear stories like this too. I want to know who stays thin on all of these medications we are all put on?? Between my prednisone (replaced by MTX) and the Lyrica I gained like 10 lbs that I didn't need to add. I have started to dread it if I see a new doctor. We shouldn't have to go through all this. Like Tgal said, WE HIRE THEM. ((hugs))

magistramarla
09-27-2010, 10:01 PM
My suggestion is if you are anywhere near a teaching hospital, find a rheumy there.
Hugs,
Marla

laura.shella
10-07-2010, 06:43 PM
Thank you all for the suggestions. I am visiting my Rheumy tomorrow. I live near Gainesville, Fl. I am going to ask to be refered to University of Florida Lupus clinic. My Neurologist suggested that I ask for a second opinion. The lupus is no where near under control. I hope all goes well tomorrow and there are no hurt feelings. Thank you all again. Sites like these ones are so helpful. They remind you that you are not alone in your trials.

Saysusie
10-07-2010, 08:43 PM
No you are not alone and please know that we truly care. Please tell us how your appointment went today.

Peace and Blessings
Namaste
Saysusie

laura.shella
10-14-2010, 09:13 AM
Sorry I didnt let you know about my appointment earlier. I havent been feeling well at all. I asked for a referral to someone else and he said he doesnt refer to other rhematologists. I would have to do that on my own. Also, that I should not go to any one in Gainesville because he was the best. Then he did wrote the paperwork for my standard bloodwork and said he could give me a diet pill to help me lose weight. He told me this maybe be as good as I ever feel. I am so tired. I just dont know what I should do now. I dont know if I should look for a new doctor, or is he right. Is this as good as I will get? I dont know. Thanks for all of your support.

Saysusie
10-14-2010, 01:32 PM
If you do not feel that this particular rheumatologist is providing you with adequate care, then you have a right to find one that you feel is better. He is pretty arrogant to say that he is the best and that you shouldn't look for another doctor. Does he feel like the best to you?? He doesn't sound like the best to me.

I also do not believe that you will never feel better than you feel today. If your doctor is truly interested in helping you, then he should be devoted to finding a treatment regimine that will help you to feel better. Instead, he has basically told you that you can do nothing else, you cannot see any other doctor, and you should just accept how you feel and never hope for anything better. This just does not sound like a medical professional who is dedicated to his patient..

Let us know what you decide, even if it is just to tell him that you refuse to believe that you will never feel any better and that you demand that he become more interested in getting you healthy than he is in tooting his own horn!!

I wish you the very best :-)

Peace and Blessings
Namaste
Saysusie

tgal
10-14-2010, 02:51 PM
Oh honey! Drop him like a hot potato! If he is half as arrogant as he sounds he isn't listening to you because he thinks he knows it all! Find a good doctor that makes you feel like you are important as a person. As long as they see you as a number they won't help. Don't forget. You hired them and you can fire them! Go with your gut and don't second guess yourself. You know your body better than anyone

laura.shella
10-14-2010, 05:19 PM
Thanks everyone. I appreciate the support. I will let you know what I decide. I should be getting some lab results tomorrow. I will be making decisions then.