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keewee
05-04-2009, 09:38 PM
Hi, my name is Michelle, I technically do not have lupus, about 2yrs ago I went to see a specialist for suspected Lupus with a high ANA reading, they virtually told me it is all in my head and I don't have any symptoms to convince them I have lupus, so off I tottle.
Now I have just been told from a Nuerologist that I have Raynauds Disease and more than likely Lupus, so who do you believe?
I have tingly hands, freezing cold hands and feet and sometimes my nose. I have extremely aching joints in my hands and severe back pain, especially around the shoulders.
So I am lost!!! like they said - it's probably all in my head:cute:

Ria0331
05-04-2009, 10:00 PM
First off let me say hi and welcome, you have come to the right place. What you are feeling is real and it's not in your head. If the doc said you have Raynauds then you really aren't making this stuff up. I would go see another Rhumatologist cause its sounds like the other doc you saw was a big jerk. I'm sorry that you had to deal with that. The only other suggestion I have for that is if you don't want to go see a different Rhumatologist somewhere else, check with another doc in the same practice. Did the doc run a whole blood workup on you? If not you need to have your blood work done. I hope this helps.
Thanks,
Maria

wrightrs
05-05-2009, 04:58 AM
Did the doctor ask you about you whole live history of symptoms. There's A list of symptoms and if you have 4 you probably have Lupus. Did your doctor go over this with you.

gina
05-05-2009, 05:12 AM
Sounds to me you need to go to a rhuemy. i would go to a new one. get full set of blood work so you don't have to be poke more than once. sit down and write down everything that is different with your body, the smallest change could be a symptom. and a lot of peopel with lupus have raynauds also. most peopel with lupus have another autoimmune disease for some reason. get a new doctor and lets us know. your at a great site for information and friends. welcome and good luck.

rob
05-05-2009, 06:19 AM
Hi Michelle,

I'm Rob, and I was diagnosed with Lupus five year ago. You ask a great question-who do you believe? Believe yourself. Believe your own judgement and the fact that you think something is wrong with your health. I hear it said so many times here-"I just knew something was not right with me". I was told it was all in my head, that I was a hypochondriac. Your problems are very real, and not in your head. Find a new Rheumotologist, and write down all of your symptoms. Rheumo's can, for some reason, be very difficult to deal with. It's OK to be an obstinate pain in the butt with these people. I really hope that you do not have Lupus in any form, but if you do, you need to know so you can take steps to treat it, and manage your symptoms.

Write a detailed list of your various symptoms, be assertive, even agressive with your various specialists if it's needed. Take someone to your appointments with you who you trust. A trusted family member, a best friend, someone who can give you a little backup and moral support. Many specialists are more likely to listen and take a person seriously if it's two against one in the patients favor. I hope you can find the answers you need, and I hope we can help you to find those answers. Welcome to our group!

Rob

mountaindreamer
05-05-2009, 07:37 AM
hi michelle,

welcome to our little family of the sky....you are now among many people who truly understand the obstacles that you are facing, and we are all here to help each other.

as rob said, take someone with you to the dr. This person can often help you remember things that have gone on with you, and can help validate your symptoms to the dr.

as gina said, make a list of "things that are different with you, no matter how small they are." I also recommend that you think back during your life, and list any symptoms that you have ever had. Lupus attacks are intermittent, and move from one part of the body to another. There is a "sticky" thread in this forum that lists the many symptoms....so research the symptoms, think back during your life for any of the symptoms, and list all of these. I like to make a copy of the list, and leave one with the dr. This enables them to refer back to your notes and helps in the diagnosis proces..

best of luck to you, keep us posted.