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View Full Version : Seeing Rheumy wednesday--Need Advice



Blayer
07-28-2008, 05:51 AM
I'm new to this site and just love it. I have been reading posts for about a week now and feel like I know all of you already. I am headed to Rheumy on wednesday for blood work results and need advice. First a little background.

I was dx with fibro in 1993 by a rheumy who said I could be the poster child for the disease. He put me on Elavil and after several years symptoms went away. I stayed on the Elavil until March 2007.

In 1999 I was dx w/ GERD and Barrets Esophagus, placed on more meds and scoped every 2 years like clockwork. Happy to report that the Barrets has not advanced. Although like others w/ GERD, I never had "heartburn" only severe back pain, anxiety, chest pain especially when breathing deeply. Meds have kept that under control real well.

In 2001, I went to the dermatologist because of this rash on my face (cheeks and nose) he dx as rosecea. He gave me a cream (metrocream) it went away, but now comes and goes. For the past couple of years, at about 7:00 pm each evening, I would get the chills real bad even in the summer. I also get sooo sleepy that I have to lay down and take a 15 minute nap. When I wake up, the chills are gone and I feel fine. I have never taken my temp. when I get the chills, but will the next time.

Several years ago, I went to my gp with chest pains, she dx it as an infection of the lining of my heart probably due to spring allergies. She put me on Claridin and symptoms went away. I now have this problem twice a year in the spring and fall.

Last year, I finally went to gp because of the foggy brain. I could not retain anything, remember anything or follow a sequence of tasks w/out getting side tracked. My sister had been given Adderall for the same problem so my gp decided to try me on it as well. Wow! what a miracle. I could finally finish a sentence, finish a thought and finish a task. My brain settled down. I joined the gym and lost 60 lbs. of the 100 I had gained with the Elavil. I was really getting into shape. Running 2 miles a day and weight training with a personal trainer. Other than the chronic diarrhea that I have been plagued with for 9 years, I was feeling very fit and healthy.

Then in May, the bottom dropped out. I started getting ankle pain and swelling in the right ankle, swelling and excruciating pain in both knees, swelling of the knuckles and joint of the fingers. My wrists started popping in and out of joint (boy that is painful). I had constant nausea and the rash on my face returned and now was on my neck too, and it never goes away. My lower back hurts all the time. I have no strength in my hands or arms. My knees buckle at times. I went from leg pressing 180 lbs. back to the familiar fibro stiffness and fatigue.

My old gp retired and her replacement ordered ANA, rheum. factor tests and sed rates. ANA was positive w/homogenous pattern others were neg. She placed me on Celebrex and Cymbalta for pain and back on Elavil to sleep and sent me to a Rheumy. Pain when from a 9 to a 2, but joints are still stiff hot and swollen.

My first visit to Rheumy entailed a basic meet and greet. Stay on same drug course but because of the homogeneous pattern, more detailed blood work was ordered.

My question (finally, huh!): I have not told rheumy about my medical past. He has only recent bloodwork from my gp from May. My appt. is wednesday afternoon, should I give him the laundry list, or just a few of the symptoms at a time? I read in one of the posts that the doc's eyes glaze over if he hears more than 3 symptoms at a visit and is more likely to place you in the hypo. category. I have started a detailed journal with dates and symptoms and treatments.

It all makes perfect sense to me. My myriad of illnesses and trips to different specialists may actually be just 1 disease....

Any advice would be greatly appreciated.

KathyW1958
07-28-2008, 06:47 AM
Hi,
Welcome to the site. I know if I were you I would tell the doctor everything. I know that that is what I did and he was able to trace the Luus back to when I was 5 years old based on when all of the symptoms started. You should take everything that you have documented with you to the doctor. I hope that he can give you some answers as to what is going on with you.

Hugs,
Kathy

laurid8967
07-28-2008, 07:58 AM
Hi Blayer and welcome!!
I am the one who said that Ive heard (and read) that docs are told that after 3 symptoms, they "turn off". However, I dont want to lead anyone to leave out symptoms either...I dont know, we've all had these bad experiences, and different things have worked for each of us...I think you should tell your doc of all your symptoms. I would hate for you to leave them out, and then be told your fine!!!
Its such a "touchy" area...I hate this process!!! The rheumie I see now (who Dxd me) actually DID want to hear EVERYTHING...yet, Ive seen so many TOP specialists who when I did try to tell them things that have happened in the past, have said, "Thats not related.." or "That happens to everyone.." Its such a crap shoot...But, the women here know FAR more than I do, and they suggest you tell them everything, so that is what I would do....I just want everyone to be listened to and Dxd properly...this issue is so personal for me...It makes me so upset to think of all the people out there suffering and being ignored...
So, I would tell them everything....listen to the veterans here...I will keep you in my Dx prayers!!! Please let us know what happens!!
Love Lauri

Saysusie
07-28-2008, 04:04 PM
Hi Blayer;
I agree with everyone here, tell your rheumy everything. After all, he is a rheumatologist and should be familiar with the fact that many rheumatic diseases come with a laundry list full of symptoms.
It is the list of symptoms, the results from lab work, clinical manifestations AND MEDICAL HISTORY that will help your rheumy to make a diagnosis. Therefore, he needs all of the information (weather he wants to hear it all at once or not!).
Let us know how your appointment goes and I hope and pray that you do not get a rheumy who doesn't want to listen and who brushes you off!

Peace and Blessings
Saysusie

Blayer
07-30-2008, 04:33 AM
Thank you all so much for the encouragement!!! The journal was a brilliant idea. As I started my list for the doc, I realized that I have had alot of these problems since my teen years (ie- uti's, skin rashes that I thought was sun poisoning, etc.)

I hope I can get some kind of resolution from the rheumy today because I spend alot of time in the sun. Unfortunately both of my careers require I spend most of the day in the sun, and on the water. Here in Florida the summers can be brutal. I do wear lots of sunscreen, long sleeves (columbia shirts with UVA protection) always sunglasses and a hat. My eyes seem to be very sun sensitive, is that a symptom? But, even with all that I do get very tan!!! And, the red cheeks, nose and neck probably seem like a sunburn under the tan although the redness NEVER goes away. If, in fact, I have Lupus I guess I will need to change careers... bummer!

And Saysusie, I too hope my rheumy is responsive. The rheumy I went to in 1993 has retired. This one is in the same group though but he is old and on the verge of retirement himself. A friend who has Sjogren's uses a rheumy at Shands at UofF who is suppose to be very renowned for his work w/lupus. If all is pointing that way, I will try to get in with him.

Well, I'll let you all know what happens.
Bye for now.
Blayer

Saysusie
07-30-2008, 10:14 AM
Yes, sun sensitivity includes your eyes. Make sure that your sunglasses have UV protection also.
Please do let us know how your appointment goes. :lol:

Peace and Blessings
Saysusie

Blayer
07-31-2008, 03:58 AM
Well- its as clear as mud now!!!
The one thing I like about this rheumy is that I never have to wait long. He is in the room pretty quick. His first words were "well your labs were positive". I'm thinking the good positive really meaning the results were negative or the bad positive really meaning the results were positive. It was the bad positive....but not so bad! Of the 12 subtests, only the scl-70 was positive- but just barely. He said that was associated with scleroderma (I had to run home and look that one up); but possibly very early in the disease. He did not give me a diagnosis though. I do understand his reluctance to diagnose so early and I appreciate that. I certainly do not want to be misdiagnosed.

Do to the unrelenting pain and swelling of my right ankle and knees, he ordered xrays. Because the meds I am on seem to be working for the swelling and pain (sans the ankle), he wants to wait and redo the labs in a couple of months. I do have an appt. in 4 weeks to see the results of the xrays-but I am calling today to move that appt. up to next week. Why wait? I have to say that the pain is about a 2 -3 compared to a 9-10 prior to the Cymbalta and Celebrex.

I gave him my 2 page symptoms list and he promised he would read it. He did say that GERD is one of the early markers for scleroderma. Saysusie, what are your thoughts. I know that alot of this is a waiting game to see what happens next. Also, my husband is the one who thinks I am a hypro and that nothing is wrong. Therefore, I am reluctant to tell him anything. I stopped at Books-A-Million on my way home and bought a book on scleroderma but felt I had to hide it from him. Maybe he is just scared! I hope that is it. I feel that I can't talk to anyone about it but you guys. Maybe when I get a definitive diagnosis they will all understand.

Thanks again for the support and encouragement
Blayer

KathyW1958
07-31-2008, 05:28 AM
Hi,
I am glad that your doctors appointment went ok. I don't know anything about scleroderma. I don't have that. I hope that you get a definitive answer soon. It is sad that your husband acts the way he does. I would not hide the book and boy he would definitely get told off if I were you. I hope that once you get a definitive diagnosis that he will come around and treat you better.

Hugs,
Kathy

laurid8967
08-03-2008, 08:40 AM
Hey Blayer -
Just seeing how you are feeling...By the way, was your ANA positive on this lab work? Or was that previous blood work? Just an FYI, your ANA can be positive one week and neg. the next. Sometimes it correlates with disease activity, sometimes it responds to meds were on, etc.
Just to let you know....I hope your pain is still a 2-3...Thats where Im at (mostly).
Keep us posted as to how you are doing, OK?
Love Lauri

Blayer
08-04-2008, 04:10 AM
Hi all:
Yes this last ANA was positive as well. My neighbor was diagnosed about 10 years ago and she ask me if the Rheumy had done an SLE test with my bloodwork. I looked and he had not. Should I ask him to perform that one as well? My neighbor didn't know if there were new blood test to positively diag. lupus now or not. Her SLE test was positive. I had a pretty good weekend. Fortunately if was rainy and cloudy (I never thought I would appreciate cloudy days!!) My right ankle and right wrist are extremely swollen though and very very painful. The wrist continuously pops in and out of joint. Boy will that bring you to your knees. My next appt. was on Aug. 25th but I was able to move it up to the 13th to get the results of the xrays. Thanks to all of you for your support. Blayer

Saysusie
08-04-2008, 10:18 PM
There really is no one test that can diagnose Lupus. However, your friend may have been referring to the DNA antibodies test. This is the highly specific test for lupus. For some unknown reason the presence of antibodies against double-stranded DNA is the hallmark of lupus. It is very specific for this disease and rarely found in any other condition. Strongly positive anti-DNA antibody tests provide almost total proof of the diagnosis (remember -ALMOST). The level or titre of the antibodies provides a rough guide to disease activity and is used by physicians to monitor the ups-and-downs of the disease.

It is common for Scleroderma to overlap with Lupus and some patients have even been diagnosed with Scleroderma Lupus. Lupus and Scleroderma are classified as vascular diseases, along with polyarteritis nodosa, and some other diseases, but Lupus and Scleroderma also have one other thing in common ó they can be treated in a similar manner with equally good results. The connective tissues are fabric-like substances that form a matrix that wraps and fills all the spaces in the body, even extending into the innermost parts of cells. All the major bodily systems--the circulatory system, the nervous system, the digestive tract, the musculoskeletal system, and each individual organ--are surrounded and supported by the connective tissue. With the exception of cartilage, all the connective tissues are highly vascular. Collagen is a fibrous, insoluble protein in connective tissue. It represents about 30% of the total body protein. The diseases that affect this tissue are collectively known as connective tissue disease (CTD), or sometimes collagen vascular diseases. These include systemic lupus erythematosus (SLE), scleroderma, rheumatoid arthritis, and combinations of these three diseases, called mixed connective tissue diseases or MCTD's. They share many characteristics and, as I mentioned earlier, they share many of the same treatments.

Like Lupus, Scleroderma is a chronic autoimmune disease. Also, like Lupus, there is no known cure for scleroderma. But, both diseases can be treated.

Lupus is a chronic disease that can affect the skin in several ways, which include patches with raised reddish edges and depressed centers, and covered with scales or crusts. These fall off, leaving ull-white scars.

Scleroderma is a disease of the skin in which thickened, hard, ridged, and pigmented patches occur. During the course of the disease, the connective tissue of the skin layer beneath the epidermis (corium) and the subcutaneous structures are increased and a "hidebound" condition results.

There are two types of scleroderma. Localized scleroderma affects the skin in limited areas and the musculoskeletal system. Systemic sclerosis causes more widespread skin changes and may be associated with internal organ damage in the lungs, heart and kidneys. It can cause arthritis, slow contractions in the gastrointestinal tract, muscle inflammation, dry eyes and dry mouth. Most people with scleroderma have cold-induced spasms of small blood vessels in their hands or feet, known as Raynaudís phenomenon, which caused the fingers or toes to turn white or blue and may be painful.

Treatment options for sclerderma vary depending upon whether the disease is localized or systemic and if there is organ damage and the extent of the damage to orgnas. In general, medications that may be used include immunosuppressive agents, antifibrotic agents, anti-inflammatory agents, vasodilators, and angiotensin-converting enzyme inhibitors. In rare cases, when symptoms of systemic sclerosis become severe, surgery may be recommended.

I hope this has been helpful
:D

Peace and Blessings
Saysusie