Hi I'm new, many symptoms and a few questions!

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New Member

Date Joined Sep 2011
Total Posts : 5
   Posted 9/14/2011 8:53 AM (GMT -6)   
Good morning to all! I have an appointment on the 22nd of September with a rhematologist for the 1st time. I went to a derm doc a few months ago for all over itchiness a month ago which prompted some bloodwork, and the ANA was positive. I followed up with my primary doc, and he had me do bloodwork again, and the ANA was 1:160, homogenous. My sed rate was normal, and that's about it. Now I'm waiting to see the rheumy. The past 2 years I've had varying symptoms that have been brushed off or blamed on something else by my primary doc. Does any of this sound familiar to anyone? I've had a skin rash that looks like to size of a nickel, round, red, itchy. It almost looks like ringworm but the derm said it's exzema. General itchiness all over. Fatigue even though I get 8-10 hours of sleep a night (I'm falling asleep at work!). Recurrent loose stools. Hair loss all over my head (not coming out in clumps but just alot coming out). Sensitivity to the heat and night sweats. My balance seems weird...I've never been so clumsy in my life. Double vision, which an eye specialist just put prisms in my glasses to fix. Achy all over, and joint pain in my shoulders and hips. No grip strength in my wrists anymore. Lets see...there's probably a few more things I'm forgetting. I'm only 29 and I feel as though I'm falling apart. My doctor said lupus is a possibility. Does anyone have any suggestions? And also what are good questions to ask the rheumy on my first visit? Thanks everyone in advance!

Forum Moderator

Date Joined May 2005
Total Posts : 7671
   Posted 9/14/2011 9:21 AM (GMT -6)   
Please check out the Lupus Resources link in my signature -- there are lots of tips about how to prepare for your dr visit!

I would not mention Lupus to the Rheumy, just make sure to list everything that your body is doing - I find it best to let the dr consider ALL possibilities before placing the suggestion of a particular diagnosis in his/her head.

Best wishes for a great Dr!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Sep 2011
Total Posts : 5
   Posted 9/14/2011 9:40 AM (GMT -6)   
Thank you Lynnwood I will check out that page. I won't tell the rheumy what I think I may have, but I will come prepared with a list of symptoms and troubles I have had. It's so nerve-wrecking waiting for this appointment, I made it over a month ago! I just hope he's a nice man. Thank you again for your quick reply!

New Member

Date Joined Sep 2011
Total Posts : 7
   Posted 9/15/2011 10:39 PM (GMT -6)   
I agree, do not suggest a diagnosis to the Doctor. The truth is they dont like it. I think personally it is an ego issue with Doctors. They are the Doctor and you are the patient, your not suppose to know more then they do.

This has been my experience with doctors. Most doctors are very nice caring people, I really like mine. But even he doesnt want to be giving a suggestive diagnosis from a patient.

You just go prepared with a list of you symptoms. Make sure you stay calm & dont let your nerves get the better of you. The appointment is short and if you get too nervous you wont get the answers you are looking for or be able to give the doctor the concerns you are having. This being your first visit to the Rheumatologist makes it a very important visit. You dont want to leave the appointment even more confused, regretting what symptoms you forgot to mention.

It is very important you take a list of your concerns and symptoms right with you into your visit. Be prepared and calm, cause it is scary. Let the Doctor ask the questions, you just give the best answer that you know. At the end of the appointment he will tell you the next step and he will order some test if he feels you need them to help him rule out certain conditions. It usually takes a couple more visits and some more testing before the doctor gives a diagnosis. I know you are scared and nervous and want the answers right now. Iam letting you know they usually are not given to you on the first visit. The doctor is going to make sure he studies every test result and is positive about his findings before giving you a diagnosis or not.

Let the doctor ask the questions, be prepared with your answer and know it usually isnt determined on your first visit. I know its hard not knowing what you might be facing.

I have had Lupus since I was 29. Extremely healthy and very active for my first 29 years. I never even heard of it before I received the diagnosis. It isnt a death sentence, it is just like any other road
block. Trying to keep a positive outlook really has helped me

God bless you, I will be thinking of you on the 20th I have a doctor appointment the same day.

New Member

Date Joined Sep 2011
Total Posts : 5
   Posted 9/16/2011 8:25 AM (GMT -6)   
Thank you S'ami for the advice. The waiting is killing me and I just want to make sure I'm fully prepared when I go. I;ve got my symptom list ready, a list of all my current meds, and a list of pre-existing conditions I have as well. I'm probably going to bring a notepad as well so I can take notes and not draw a blank when I get there. I hope your appointment goes well and I will post back after mine.

Regular Member

Date Joined Sep 2011
Total Posts : 51
   Posted 9/16/2011 8:45 AM (GMT -6)   

(((hugs))) I relate to feeling like you're falling apart. I was 25 when I was diagnosed with degenerative disk disease and osteoarthritis, and 35 when I was diagnosed with SLE. I think it's perfectly natural to go through a period of grieving for a new diagnosis.

While it's good to acknowledge your feelings, it's also good after a certain amount of time not to wallow in them. My mother (and best friend) gave me a kick in the butt to start looking at the positive and get on with life. Thank God for family!

Instead of focusing on my limitations, I try to work daily on giving thanks for all the blessings in my life. It takes daily work, and you feel like a dork right at first, but it works. I still have days when I'm blue, but I like the fact that I am taking control of my perceptions. I also keep a gratitude journal, and when I'm anxious or depressed I flip through it and feel better.

Your friend,
dx SLE 07/2011, OCD 2006, osteoarthritis 2002

Regular Member

Date Joined Sep 2011
Total Posts : 33
   Posted 9/21/2011 2:32 PM (GMT -6)   
This was an up lifting post. I needed it!

Regular Member

Date Joined Sep 2011
Total Posts : 26
   Posted 9/21/2011 9:04 PM (GMT -6)   
Hello Chigirl,

Your symptoms are all too familiar. I too began with the same. It can be very frustrating. But, the good news is there are some good days ahead. Once you see your rhemy make sure he or she doesn't shun you off. My rheumy wanted additional bloodwork. I was very blunt and informed the rheumy the following: "I have this constant pain, my scalp itch and burn, I lose more hair than I care to talk about, my head hurt, my eyes are swollen and burn like hell, I have little white painless sores in my mouth, pain in every joint, muscle fatigue, swelling in my hands, joints and feet, my hands turn blue from time to time, rashes from time to time and I smile through the pain to prevent from crying, so Doc tell me -am I crazy, imagining the pain or is it really a Lupus flare? I refuse to do any further testing, I'm tested out!" Believe it or not it left the Dr. speechless. I said this to the Dr., because, like you, I have been going to Drs for years and every symptom is diagnosed as something else. Its been my experience that sometimes Doctors get stuck on stuuupid and relate all cases. It may seem that I'm angry. Not angry, just tired. I've spent hundreds of dollars on prescriptions and doctor visit and needless to say the insurance has paid hundred's of thousands. Now, I don't have the best insurance and can't really afford Dr. visits because I can no longer work due to all the complications and pain on a daily basis. But anyway, :-) I wish you well, I hope you get the answers you need to get the treatment needed and try to get on with your life as painfree or painless as possible. Trust in me when I tell you I feel your pain!
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