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Willow73
New Member


Date Joined Aug 2007
Total Posts : 15
   Posted 8/26/2007 5:13 AM (GMT -7)   
Hi! I am new to the forum. I am in the process of finding out what kind of arthritis I have. My doctor has ruled out RA, and OA, and now is leaning more towards Lupus. My last visit with the specialist was last week and he mentioned something called serositis. I think that is what he said. I am on line right now trying to look it up to see what that is. I guess I wasn't "hearing" everything after he mentioned Lupus to me. Sometimes doctor's visits go by so fast, you don't have time to take it all in and process it enough to collect yourself and ask some questions!
 
Anyway, I had a few questions for everyone, but I can't think of them right now. (I woke up today with a sort of brain fog... which is strange to say the least!). Anyway, I can't remember what word he actually used... it could have been serositis, or sarcoiditis... does anyone have that? I guess the real thing that is bothering me is that I don't really know what he is thinking! I have had some type of arthritis for a very long time...but only recently (last May) did I really have a "flare". I couldn't move at all. I woke up one day and I was so swollen everywhere and sore. I need help with doing the most simplest things. Brush my hair, brush my teeth...get dressed. But by the time I went to see the specialist, it had passed. I wish that he could have seen me when I was in my flare. Maybe I would have some answers by now?
 
Sorry for the sob story... just wanted to say hello to everyone and hopefully someone has heard of serositis? I am 95% sure he said that, and though my chest x-ray he sent me for didn't show anything, he wasn't ruling it out.

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/26/2007 6:42 AM (GMT -7)   
Hi Willow and welcome.  First of all you don't have to appologize about telling your story.  You are among people who really do understand all the frustrations and the emotional ups and downs of living with chronic illnesses.  I'm sorry that you are going through all of this and I really hope your doc can help with a diagnosis.  I don't know how much you know about lupus, but it's one of those illnesses that can a long long time to diagnose because lupus symptoms are also present in many other illness and there is no one specific blood test to tell whether you have lupus or not.  Some of us have had to wait years, while others get diagnosed fairly quickly. 
 
The brain fog you mentioned is something that most of us deal with a lot - so we definitely understand when you say you can't remember what you wanted to ask.  It can also make it hard to take in everything you hear in the doc's office.
 
Please go ahead and ask all the questions you want to, as you remember them.  There are some good clickable links in my signature - there's a lot of good info about lupus.
 
Also, here's a link to a good article I found on sarositis - it sounds like it is something that is related to lupus:  http://lupus.morefocus.com/articles/lupus-symptoms/serositis.php
 
I'm glad you joined us and I hope you get some answers soon.  We're here for you through all of this - this is a great place for support.
 
Take care and keep us updated on what you find out.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/26/2007 9:45 AM (GMT -7)   
Willow,

Welcome to the forum. I think you'll find this a safe and comforting place to come and ask anything you want, vent, complain, and just get your frustrations off your chest. We're a little family here and support each other through the good times and the bad and I'm glad you're part of us now.

Brain fog has changed my personality more than any other symptom of lupus so I really do understand what you're going through. As far as not remembering exactly what the doctor said, have you thought about calling his nurse and explaining what you told us and asking her if she could pull your chart and go over his notes with you. Nurses in general tend to be compassionate people.

Post as often as you want. We're here for you.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 8/26/2007 10:27 AM (GMT -7)   
Willow I am new to the board too! I have a few questions for you? My rhuemy refuses to dx anyone without some hard core serology to support the idea of lupus. Did he run a panel of labs on you? How did they turn out? I do not have any " real" arthritis either. I have tendonitis,bursitis and sinuvitis but not RA. I understand brain fog. Its perpetual for me, sometimes worse then others. Nice to "meet" you.

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/26/2007 12:11 PM (GMT -7)   
Hi Willow, like the others said don't apologize. I loved reading your story. We all have a story to tell. Besides you can never tell if maybe somthing you say might ring a bell and help someone else out. Somtimes I feel like a wacko about a symptom than someone else will say yeah I have that too. It's comforting to know I'm not completely going crazy. Boy I think we all kno the feeling of the in and out of the doctor office. On the way home you remember what you wanted to say. I'm thinking about taping my first appt: with my new rheumy. My brain can play tricks on me so if it's on tape I'll know exactly what was said and what wasn't said. Anyway Welcome to the family I look forward to getting to know you
God Bless
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 8/26/2007 7:10 PM (GMT -7)   
Welcome, Willow. You certainly don't have to pass out apologies here! Doctors appts. can certainly be frustrating as we have so much we want and need to know. We are also at the same time trying to grab hold of every little piece of info. being thrown at us hoping it will provide some answers or possibly provide some relief. Unfortunately, I'm not familiar with what you've mentioned, I just wanted to second everyone else that we are here to listen. Lupus can be very difficult to diagnose and it can take years for everything to come together for a correct diagnosis. I wish you luck with your doctors. Feel free to come here and unload or just look for support!
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


Willow73
New Member


Date Joined Aug 2007
Total Posts : 15
   Posted 8/27/2007 5:03 AM (GMT -7)   

Wow! Thanks guys! I was lurking for a while, reading your posts, and kind of shy to post at first. Sometimes, I really feel like I am going nuts. What is a sympotm, what is just  normal everyday pains? confused

Chaya, they did do blood work on me... I have had high ANA for the last few years, very high Sed rate, I am negative for Anti-DNA. That turned out ok.

I had a high C-reactive protien. I tested positive for the Rheumatoid factor once, a while back... but it was a weak positive. I had a low platelet count. They tested for the complement proteins (C3 and C4) which came back alright.

They ruled out RA because the joints in my fingers and toes were not involved. I had severe inflamation, but all x-rays show no damage to the joints (thankfully!). The joints that give me trouble are wrists, knees, ankels, elbows and jaw (I have had TMJ since I was in Jr. High... I am 34 now). If I don't chew gum, my jaw is ok.  :-)   Also, my symptoms seem to come and go. I will have periods of being ok and just fine... I even do cardio and weights sometimes without any discomfort...but suddenly, out of nowhere, I will flare up. Why can't one of those flares be when I go see my doctor??? I am thinking that I might take pictures of my joints when they do flare to take to him... his office is over two hours from me, so I don't have an apointment too often. In fact, I saw him last week, and he told me to go see my family doctor if I have anything else. No more follow ups. I am assuming it was because I wan't having any trouble then. I was fine. But I am sure if I have another flare, my family doctor will alert him.

What make me wonder is what I saw at the doctor's office the last time I saw him. I don't like to complain. It is hard for me to go to the doctor's office and when they ask how I am, to say "well, I am in pain" or "I'm terrible!". But this woman came out of the examination room, looking like me, like nothing was really bothering her that day (she was moving fine and didn't seem in any distress), and they told her to go downstairs (this is in a hostpital) for more blood work and they will see her the next day. It sounded like she goes to see him every single day! I wondered what she has? As soon as I thought that, I felt really bad, but I was wondering what was wrong with her? What is she saying to him that is getting her answers? It is frustrating.

I know it takes a while for people to get diagnosed, but this has been going on since I was 16. I still don't know what I have. My family doctor always says "How is your arthritis today?", but I have no idea what I have. Not that it is something I need to know, but I would like to have a name for it and then I can go live my life. I am just about ready to give up. If only I had the guts to ask my family doctor what this specialist is saying... he sends him a consultation report every time I go see him. It is right there on the desk when I go see my family doctor -in my file, but I am too chicken to sneak a peek in case my doctor comes in the room while I am perusing the file! lol

 


Willow73
New Member


Date Joined Aug 2007
Total Posts : 15
   Posted 8/27/2007 5:21 AM (GMT -7)   
Oh! I forgot to mention that the last flare I had, damaged my thyroid gland and now I am hypothyroid. Also, I have really bad problems with my esophagus, and have problems swallowing, which made my family doctor think I needed to see a specialist.

CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/27/2007 8:12 AM (GMT -7)   
Willow - Welcome! Just wanted to say hello, and that I also "lingered" around for a while and asked questions here and there at first. Normal process of getting to know people and seeing whether or not you will fit in and if they would welcome you. I was timid at first. I am happy to see you are here and asking more questions. What you describe sounds a lot like the rest of us with a connective tissue disease, so I think you would benefit from this forum(and so would we). Personally, it took me years to get a diagnosis (my symptoms were unusual at first) and they still give me a hard time with it. I guess all you can do is hang in there sometimes.

To save time, you may want to gather all records of your past diagnoses, i.e. the thyroiditis, GERD, arthritis, etc., and all the bloodwork/urinalysis records (including the ANA, Complements, etc.) There are 11 criteria for lupus and apparently you need 4 to qualify. It sounds like you may be close to or already have 4. You will want confirmation of the diagnosis as well as the records to back them up. It is a pain in the rear, but takes the guessing game out of the equation.

I wish you the best and hope to hear from you again soon - kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/27/2007 8:54 AM (GMT -7)   
Willow, you have the right to see your chart. You can always call the doctor's office and ask the receptionist or the nurse to send you a copy of your chart, or the doctor's reports that he sends to your family doctor.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


Willow73
New Member


Date Joined Aug 2007
Total Posts : 15
   Posted 8/27/2007 3:12 PM (GMT -7)   
There are times when I want to see what was said in the consultations (in my chart), but at other times I am scared to read what was said. Sometimes doctors are not nice. I work at a local hospital, and a few years ago, I went to this rheumatologist that comes to our hospital every few weeks for appointments. I waited six months to see him, and when I finally was there, during the whole appointment he was having his lunch! eyes I was alone to see him, and I look young... mabye he didn't seem to think I was wasting his time? He used my medical chart for a table on his lap to rest his sandwich. He asked me a few questions, ate his lunch and totally ignored me for a bit. Made a telephone call to buy something with his visa, then I was sent on my way. I was so embarrassed, and totally convinced I was wasting his time and must be going insaine to think I actually had anything wrong with me.
 
I work at that hospital in the medical records, and as luck would have it, one day I was filing and this specialist's consult that he had with me to my family doctor was there in the pile of sheets I was filing! So, I read it. I was so angry! He discribed checking out the joints I was having trouble with... when, in fact, he didn't do any of that! He never even looked at him at all. (he seemed to be enjoying his sandwich too much! lol) He said in the report that there seems to be no swelling or problems with my right elbow(which was giving me trouble) or any other joint I was having trouble with. Nothing to indicate any type of arthritis, and sugested that I had "growing pains". I found most of that funny since, at that time, I was 26... and how could he tell all that through my jeans, sweater, and jacket - I hadn't the time to even take off my jacket because the appointment was over in a few minutes. It was awful. I was so angry when I read all this, that I made an appointment with my family doctor and told him flat out what happened - that nothing in that consultation report actually happened! My family doctor knows me all my life, and for me to be so upset and so vocal (I am a shy person, but even more so when I go see doctors because I hate talking about myself). So, now I go to a new specialist and he is really nice.  
 
I have had this bad cough for over a month now, and I think I might see my family doctor for it. Maybe during that visit I will ask him about what was said about my last visit. Also, the last week or so, I have this swelling and pain on the bottom of my left foot (around the arch). I have no idea what that is... probably nothing, but I have a hard time putting any weight on it. I was scared last night that it would result in my ankle swelling up, which is how my last flare started. I just never know what is going to happen these days. Really frustrating.

sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 8/27/2007 9:07 PM (GMT -7)   
Hi, Willow. For a long, long time I too had trouble talking to my docs. As many here probably already know, I was in a bad car wreck and sustained a traumatic head injury in it. I was in a coma for a month. I had to relearn to talk, walk, eat, just about everything I'd known from birth during my rehabilitation and recovery. Because of my physical disabilities and the fact that the docs I was seeing knew of my head injury, I always felt they already "questioned" my thinking before I said a word. So, I would just go to appts, sit and listen, take my meds, follow instructions, etc...say nothing. Well, that actually worked out during my recovery from my wreck because fortunately, I had very caring docs with my best interest in mind. They were interested in my recovery because I was their "miracle". They really didn't expect me to do as well as I did. BUT, 11 years later this lupus decides to come to life. I then had a jerk for a doc that was only interested in how many people he could swing in and out of his doors each day. After several misdiagnosis', being talked to like a child, and just plain TIRED of being put off; I began to speak. Quite loudly. I have changed docs and am now trying to work with the new ones I have to do the very best I can despite this disease. You MUST be able to clearly communicate with your docs. If you get a jerk like that one you spoke of, dump them! This is your health! Only you will suffer because of it. I am sending you a cloud of confidence to surround you the next time you see that doc you've known for so long and feel comfortable with. Please do for your own benefit ask whatever you need to ask. This is one tough disease and you cannot fight it by yourself. Any peace of mind you get can only help you as stress is a bad trigger for added problems. Take care and let us know how you do.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/28/2007 7:13 AM (GMT -7)   
Willow, what a horrible experience with the sanswich doctor. He probably could have been turned in for insurance fraud since he didn't really examine you, but claimed in his notes that he did. I'm glad you didn't go back to him. I'm also glad you have a great family doc. For about the first two years of my illness, my family doc helped me more than anyone else and was instrumental in helping me get a diagnosis. She ran labs everytime I flared and documented all the swelling and all the fevers I had as well as forwarding abnormal labs on to the rheumatlogist. My family doc knew I had lupus, but she couldn't over ride the rheumy. about a year ago I finally got a new rheumy who is great and diagnosed me right away.

I'm hoping your family doc can help and get things figured out with your cough. When you have autoimmune issues, it's important to get those kinds of things checked out.

Take care and let us know what your doc says.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Willow73
New Member


Date Joined Aug 2007
Total Posts : 15
   Posted 8/28/2007 12:43 PM (GMT -7)   
You know, you guys are really helping out a lot. I was ready to just live with it. I never knew how hard arthritis is to diagnose in people. Sharentrials, it is amazing how far you came after your accident! Your inner strength must be amazing to bring you this far. A true miracle.

Hippimom2, it was a very bad experience. (what made it worse, is how hungry I was when I went to that appointment. He didn't even offer me a bite! ha ha!). All joking aside, I thought it was awful too for him to write a whole two page consult up on things he didn't even do. Obviously, I was only there for him to cash in.

I have a question for everyone.... is stress a trigger for a flare? I had a really stressfull situation at work at the time of my major flare, and I am thinking maybe it was brought on by the stress??

tink 2
Regular Member


Date Joined Jan 2007
Total Posts : 371
   Posted 8/28/2007 2:55 PM (GMT -7)   
Welcome Willow you are in a good place now
Lupus since 2005, MCT since 2005 polymysoitis since 2005,Arthritis since2005 sjogren's syndrome since 2005, vertigo since 2006,migrains since 2006, diabetes since 2006, Depression since 2004. who would not be with all of this.
 
       I just try to make it threw every day as best I can.
        God please remember I am on the diet platter.
                  So many beads so little time.....
 
                   Have a great Lupie Day Denise 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 8/28/2007 6:30 PM (GMT -7)   
YES! Stress is the Number One trigger for Lupus as far as I'm concerned.

Physical, emotional, even spiritual stress can bring on any number of strange lupus reactions for me. Sometimes the stress is so minor that I don't even notice it enough to label it as stress, but when the joints start aching or I have a random inflammation for which there is no known physical stress....it's gotta be lupus! Fun, fun. fun....

I'm sure you'll find may others who feel the same way,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 8/28/2007 7:55 PM (GMT -7)   
Hi, Willow. I hope that my recovery does inspire you, but I didn't do it alone. We all share access to the source of my inner strength! When you realize you can't do it by yourself and let go of it, miracles do happen! I will remember you in my prayers to strengthen you.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 8/29/2007 7:35 AM (GMT -7)   
Hi Willow,

I wanted to add my welcome as well. I'm sorry its so late. I have had some swelling in my ankle so I had it up most of the weekend and site problems and work has been keeping me away for awhile from here. I wanted to let you know that I know exactly how you feel. I used to be ashamed to ask or question anything from the doctor but I have a great doctor who always has an answer for me. To think a couple of years ago, I would not even speak until the doc asked me a specific question to now, just yesterday I was reading my chart at the front desk as I was waiting to check out (although a lot of it I couldn't read cause the drs writing :-)

Everything I have heard about also says that stress is definitely a flare trigger. Good or bad stress can bring on problems so I have tried to plan my days out instead of what I used to do, live by the moment. I have become very routine now and even though I miss the spontinaity of my life, I am comfortable knowing what I am going to be doing next week at this time. My next thing I want to learn is meditation, getting through tough times with the least stress possible is the goal.

Hope you enjoy the site and forum.

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin PRN, Miralax 17g, Supplements


http://www.healingwell.com/donate


Sh00p
Regular Member


Date Joined Mar 2007
Total Posts : 21
   Posted 8/29/2007 10:33 AM (GMT -7)   
Hi Willow,

I just wanted to say welcome as well. I'm pretty knew to the Lupus thing and just want you to know if it weren't for this forum I think I would go crazy. Everyone here is so understanding and they are great at answering questions. They are always quick to point out that their information is from experience and that to me is way better then from a doctor that only knows what a text book told him/her.

I know the "fog" you spoke of earlier. It's majore issue in my life and takes it's toll on my job. I can't seem to remember what I did yesterday half the time. This disease can be very frustrating, but please don't give up finding an answer. If you are experiencing something and are too scared to ask a doctor post it here. I find it much easier to ask questions online then to ask them face to face with someone.

Hope you find your answers soon!
StacyLee
 
1 Peter 4:1
Therefore, since Christ suffered in his body, arm yourselves also with the same attitude, because he who has suffered in his body is done with sin.
 
 

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