Just got back from the ER...

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SuperGirl413
Regular Member


Date Joined Apr 2007
Total Posts : 22
   Posted 12/17/2008 2:26 PM (GMT -7)   
I woke up this morning in a tremendous amount of pain all over but my hands and my back were especially painful. Walking was close to impossible. I managed to get myself to the ER and it was actually a good visit.

Thanks to all of you here, I was armed with my list of symptoms over the years as well as my family's medical history. In between crying, I was able to tell the doctor my current symptoms and I showed him the list.

He consulted (via phone) with the rheumatologist that I will be meeting next week in regards to tests he should run. I had extensive bloodwork and xrays done. The ER doctor reviewed my ANA results from a few weeks ago and he also showed me that the SSA test was positive. I don't really know what that means. I tried to goggle it but not a lot comes up.

Anyway...he gave me motrin. He was leaning towards prednisone but the rheumy wants to wait until he sees me so that he can see the symptoms as they are presenting now. The ER doctor asked me to try to hold on until then but if I couldn't, come back to the ER.

I felt heard today for the first time in a long time. I felt prepared and I really feel like next Tuesday's visit will lead to some conclusive information. I am still in pain but I am going to push to make it until Tuesday.

Thank you to everyone for your support!

Nicole

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 12/17/2008 2:29 PM (GMT -7)   
All right!!!!!!

So wonderful that the new rheumy was willing to do a phone consult before even seeing you -- that sounds like a VERY ENCOURAGING first impression from him!!!

Don't hurt yourself trying to make it to Tuesday, but hang in there. It is important that they see us flaring.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/17/2008 4:24 PM (GMT -7)   
Nicole ((((((((((((((((((hugs)))))))))))))))))). I'm so relieved for you and so encouraged!  You were heard.  It sounds like things are going to really start moving ahead.  I'm very glad that the rheumatologist wants to see you before treatment is started.  That's really important.  Your symptoms won't be masked by anything.  Prednisone works very quickly.
 
That SSA test is probably the SS-A/RO antibody.  If you google that, a lot comes up. Here is a summery I copied from a website...
 
Patients with these antibodies more often have extraglandular disease including vasculitis, purpura, lymphadenopathy, leukopenia, thrombocytopenia, hypergammaglobulinemia, and the presence of rheumatoid factor
 
The words I highlighted in bold, are conditions I have along with the lupus. 
 
Take it as easy as you can till Tuesday. Keep writing things down.  I'm so encouraged for you Nicole!
 
Lots O love
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


SuperGirl413
Regular Member


Date Joined Apr 2007
Total Posts : 22
   Posted 12/17/2008 11:06 PM (GMT -7)   
Thanks Ginny and Lynwood!! That info helped. I have been asleep for most of the day post ER visit. I am still in pain but the motrin is helping to make it a bit more manageable. Emotionally I feel better. I feel like next Tuesday's appointment will bring some answers and I got most of tests he wanted to run out of the way today. It's a real relief.

There are three words that the doctor said that stick with me. He said "You're not crazy." Sometimes in this process of being in limbo for years, you feel like you are. I have at times. It was nice to hear him validate my symptoms and tests. I feel a renewed faith to keep on moving.

Thanks again!

Nicole

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/17/2008 11:30 PM (GMT -7)   
Hi Nicole,
 
I am sorry you are feeling so badly and in so much pain, but happy for you that you actually had a positive meeting today in the ER. Many times simple things like having someone actually listening attentively to what we are saying and actually believing what we are saying makes all the difference in the world. That difference can change our mental state and in someways can truly make us begin to feel a bit better over all.
 
I pray that your appointment next Tuesday will be just as rewarding. As the other ladies have stated, try and take it easy until then, get as much rest as you can and keep writting down all the important symptoms that you can take to your appointment to discuss with your doctor.
 
Keep us posted.
 
Hugs,
 
Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 12/18/2008 6:48 AM (GMT -7)   
Oh, yes, the huge relief when the medical profession says "you aren't crazy" or "you aren't imagining it" !!!!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/18/2008 7:35 AM (GMT -7)   
Good morning Nicole!
 
I hope you got a good sleep last night.  Oh yes, I heard the, "you're making all this up" when I was at the stage you're at.  To finally hear validation is so incredibly relieving. LIke a huge weight being lifted.  I'm feeling this relief for you!
 
What an amazing Christmas present you'll get if Tuesday is the day that you finally get closure on the "what is all this?", and you can finally say, "I have THIS, and THIS is what the treatment is going to be, and I'm going to start feeling better!"  My closure and diagnosis came on Halloween devil .... Hahaha....
 
Have a restful day Nicole!
 
Ginny 
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


SuperGirl413
Regular Member


Date Joined Apr 2007
Total Posts : 22
   Posted 12/19/2008 12:57 AM (GMT -7)   
Thanks Lynwood, Melissa and Ginny!

Ginny...I slept fairly well. I am a graduate student and had my last final of the semester today. I set my alarm super early and gave myself plenty of time to get out of bed this morning.

The motrin is managing the pain well enough for me to move but it is still very much present and it's not doing much for my hands. That's okay...I just have to hold out until Tuesday. I am almost there.

Overall, today was a good day. I thank God for it.

Nicole

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/19/2008 8:02 AM (GMT -7)   
Amen!  Nothing like a good sleep, or even a partial good sleep!  Having your semester finished must also be helping you to feel calmer, more restful, and not so go, go, go! 
 
Well that's good that the motrin is helping, even if it's just taking the edge off.  I want so much for you to have such incredible pain and fatigue relief that you start doing the happy dance yeah !
 
I hope today is another good day for you. I can tell your spirits are up and that is such a good thing!  I'm smiling right now tongue .
 
Take it easy!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/19/2008 9:15 AM (GMT -7)   
Hi Nicole,

I just finished my degree in June, I know the immense energy it takes to study for finals when you feel so bad. You are a strong woman to be doing this. Just keep putting one foot in front of the other, that's what I keep telling myself. It felt like forever and there were days when I just sat there and cried because I didn't think I could do it anymore, but boy let me tell you how good it feels to have it behind me.

And even now that I am on short-term disability and possibly not returning to work, I think it's okay, because look at everything I have accomplished! You will too!

I'm glad you have gotten some relief and if you've made it this far girl, you can make it to Tuesday!

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


SuperGirl413
Regular Member


Date Joined Apr 2007
Total Posts : 22
   Posted 12/19/2008 11:17 PM (GMT -7)   
Thanks Melissa. To see what you've accomplished through this is encouraging. I am about 6 months to finish my degree...one foot in front of the other...I will remember that:)

Nicole

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 12/20/2008 10:50 PM (GMT -7)   
Nicole, I was a grad student in my first semester of grad school when I first got sick and my symptoms were so vague that it was difficult at first to get anyone to listen to me. My first ER visit the resident wanted to send me for a depression screening-he did not think there was anything physically wrong with me despite the fact my blood preasure was so low I kept thinking I was going to pass out and my heart rate was too high.
Two weeks later when I went to a new PCP (before that I was only seeing the on campus doctor). I told her I sometimes thought I wasn't really sick becasue I did not have "real" symptoms.
She looked at me and said "you are the sickest person I will see today." then she told that she was 95% sure that I had Stills Disease. I felt better immediately.

SuperGirl413
Regular Member


Date Joined Apr 2007
Total Posts : 22
   Posted 12/21/2008 12:09 AM (GMT -7)   
Wow sjkly,

I had to look that up. I have never heard of Stills Disease until you. I am quickly learning that the autoimmune family of diseases are some of the most under-researched ever. It's unbelieveable!! Regardless of what my diagnosis ends up being, when I feel better, I really want to exercise my voice in making a positive change in this area of medicine.

I am certain that there are so many people who's voices need to be heard but have been silenced by ignorant (I mean that literally not in a sarcastic or mean way) medical professionals.

I am glad to hear that you felt better. That is so encouraging to me right now. I am on the countdown to my rheum visit. It's about 60 hours and counting:)

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/21/2008 3:02 PM (GMT -7)   
Do you all ever watch mystery diagnosis? I was watching it the other night and thought for sure they were going to tell the guy he had Lupus, but in the end they diagnosed him with Stills. I had never heard of it until then either. It is very, very simular to Lupus. Just like Lupus it is very hard to diagnosed and takes a long time. This guy on the show had been to doctor to doctor, they had been telling him it was all in his head, all to familar.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

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