Waiting for rheumoltologist appt and diagnosis

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lgail
New Member


Date Joined Oct 2010
Total Posts : 8
   Posted 10/25/2010 9:35 AM (GMT -6)   
I have recently received a positive ANA 1:16 speckled. Have been experiencing horrible fatigue for several months which is getting worse. All other blood results are normal. I am going to the rheumotologist on Friday and concernecethat I will be told depression and anxiety like I have been told by my primary doctor.I really need to get diagnosis and treatment soon; I am tired of feeling like this.Also have hair loss, light sensitivity, corneal dystrophy, thirsty, weight loss, rapid heart rate and . A ct scan of my lungs shows mild scarring but my primary thinks this is just some old scar from childhood infection. Any suggestions to help me when I see the specialist. I am concerned about my symptoms being dismissed as anxiety and depression. Also, this all started with poor sleep quality; frequent wakening and continues with the same.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 10/25/2010 9:52 AM (GMT -6)   
There are several suggestions for a first Drs visit in the first topic, Lupus Resources. Make a list of all your symptoms, no matter what you think they might be related to. Let the Dr make a diagnosis, don't mention depression, anxiety or lupus - at most say something like - I'm here because friends have mentioned it might be autoimmune. Go clean and neat, but don't use makeup to look better than you feel.

Hope your rheumy appt goes well,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/25/2010 6:07 PM (GMT -6)   
Hi Igail, welcome to the group. Lynnwood gave you some good advice. Actually even if you do have anxiety and depression you would not be any different then most of us. I have both. It's actually part of the disease. Lupus can cause low adrenal gland function and adrenal fatique causes depression and anxiety. If your rheumy does not give you something for your symptoms I would suggest you find another rhummy. most of us are not lucky enough to find a good one right off the bat. Make sure you write down all your symptoms. ask your family if anyone has any of the symptoms you suffer from.
let us know how it goes and if you have any more questions before friday be sure to shout out. I doubt if out of all of us there is much one of us hasn't suffered with.
blessings
carol
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol.nexium,temazepam,predisone,plaquenil,propanalol
citracal,pottasium,vitB12 ,iron,xopenex,advair,spirivia,soma,b12 shots,Vitamin D, cybalta
Dx lupus, scleroderma, pos. fibro, high bp COPD, need left lung transplant. cervical cancer survivor, osteoporsis, Jesus is a friend of mine.
"We come into this world crying while all around us are smiling. May we so live that we go out of this world smiling while everybody around us is weeping."

lgail
New Member


Date Joined Oct 2010
Total Posts : 8
   Posted 10/29/2010 11:54 AM (GMT -6)   
Well, I had my appt this morning. Doctor said I may have a connective tissue disease and ordered lots of bloodwork; CRP, Celiac disease panel, Complement C3C, and C34, Creatinine Kinase, DNA,AB, Parvovirus, Rheumatoid Factor, Sed Rate, SM and SM/Rnp AB, Thyroid Perozidase and Thyroglobulin AB. Did anyone have to get the same or similar blood panel. The whole thing is very frightening. He was going to prescribe Paquenil, but decided to hold off until after the results. The most anxiety producing thing is he doesn't give the results until the next appointment which is almost a month from now.

RA Info Sponge
Regular Member


Date Joined Oct 2010
Total Posts : 29
   Posted 10/29/2010 2:12 PM (GMT -6)   
Igail, Welcome to the forum. I felt the exact same way 2 years ago. The waiting game drove me crazy! Actually, I am playing the waiting game again. I was in a flare when I had my last bloodwork done a month ago and I don't go back to the rheumy until Nov 15th. I'm so curious to know if there's been a change. I just want a diagnosis! Is that so much to ask? Unfortunately, it is too much to ask for with a autoimmune disease because they are all so similar. You have to wait for additional symptoms to appear to determine what disease(s) it is which seems like forever.

I also had a lot of bloodwork done after my first visit.

Results were:
Rheumatoid Factor - Positive (279 to be exact) (Positive RF with negative Anti-CCP usually found in patients with SLE Lupus, Scleroderma & Mixed Connective Tissue Disease)
SCL-70 Antibody - positive (anti-body found in patients with Scleroderma)
ANA Screen - Positive (speckled) (found in patients with Lupus)
HLA-B27 Antigen - Detected (90% of patients with this antibody have Ankylosing Spondylitis)

After the bloodwork came back and showed some things being positive I was sent for X-rays of my ankles, feet, hands, wrists and sacroiliac joints, a barium swallow, pulmonary function test and EKG. Fortunately, all were negative so there is no damage to the joints, lungs, heart or esophagus as of October, 2008. I'm hoping that he will order a re-peat of the x-rays and barium swallow since I have had some recent issues that lead me to believe that something may possible show on them by now.

I was prescribe Plaquenil to slow/stop the progression of the disease. Unfortunately, we don't know what disease. As of now I'm listed as "undiagnosed connective tissue disease". I have done really well over the last two years until I had a rough flare about a month ago when the temp started dropping. It lasted about 2-3 weeks.

I understand how frightening it can be. At times it all just CONSUMES me. I have been CONSUMED since my last flare. All I do is read the forums, books and research the internet to try to find answers. The first Rheumy I saw said she thought of the diseases I tested positive for she was leaning towards Scleroderma so I've been reading, "The First Year-Scleroderma" by Karen Gottesman (a sufferer of the disease herself). I have learned a lot and I feel like we (my dr and I) are doing everything right to try to figure this out. The more you research and learn about the diseases the more prepared you will be in your visits to the dr and the more active you can be in helping your dr to learn what you have. I keep a notebook of every symptom I have whether it may be related or not. I take it with me to my appts so I can discuss everything with my dr. Since I usually have a hard time remembering everything this really helps. I requested a copy of my lab results and I look over them closely and if theres something I don't understand I research it on webmd.com or google it. I can't even begin to tell you how much this has helped me.

I wish you the best with your next appointment. Please keep us posted. Don't be afraid to ask for a copy of the lab results and take a notebook with you so you can make notes of things that you may want to research. Feel free to ask if you have any other questions and/or concerns. We are not doctors be we are here to support you.

Sincerely,
Jeni
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