Frustrated with edema

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 5/14/2007 1:15 PM (GMT -7)   
 
 
Hi:  Just wanted to complain really.  I have full body (knees and up) edema for a month; increased red & white cell casts, bacteria and epithlial cells (protien is actually ok for once) in urine; .59 GFR and now having trouble with a depressed/insufficient heart - the ER diagnosed is as "viral syndrome".  I do not have a good feeling about what is going on and I am very worried. Although I have chest and right kidney area pain, I don't have any signs of the flu or infection.  The diagnosis worries me.  I had to fight with him to get him to understand I was diagnosed with lupus, which for some reason turned into an inquisition/interregation of when, where, why and who diagnosed me with lupus - but, of course, this is what I go through everytime I go to the ER.  I got more blood work done which will hopefully clear the air.  In the meantime  I have to deal with not breathing ok, recurrent chest pains, kidney and sore ribs, and discomfort.  Just wanted to say I am not happy.  Thank you for listening - Kristin

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/14/2007 2:51 PM (GMT -7)   
Kristen, I don't blame you for being worried and scared about all of this. I just shook my head when I read about the ER doc questioning your lupus diagnosis - how frustrating and also rude of him. He could have just asked who your rheumatologist was. Did the ER doc recommend anything as far as treatment?

Have you followed up with your rheumy about this yet? Even though you were seen in the ER, your rheumy may want to see you too. The edema sounds scary as well as some of your labs.

I pray that some of this gets resolved soon and that you start feeling better. Keep us updated when you are feeling up to it.

hang in there and take care
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; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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



mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 5/14/2007 3:33 PM (GMT -7)   

Hi Kristen,

   I hope you have an appt with your rheumy soon and he can get this figured out for you. It sounds like you need some answers right away and relief...((hugs)). Please keep us updated and take care. You will be in my thoughts and prayers.

                                                                    Babs


 
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 5/14/2007 5:41 PM (GMT -7)   
Hi Kris, I can't beleive you still have this! I'm sorry and frustrated for you. It can't be good. I hope you can get some answers soon

hugs
carol
God Bless
Carol
 
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , vicodin.5x3, Evista for osteo,. oxygen Plaquanil800mil, . effexor. spiriva, xopenex. pred.10.mil.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 5/15/2007 6:46 PM (GMT -7)   
Hi and thank you every one.  Went back two days ago and today to the ER.  GFR still dropping.  Saturday they said it was viral syndrome, today it was back pain (R kidney hurts bad).  No kidney stones.  No UTI.  Wanted to give me tons of Motrin and pain killers.  Refused to take them as my GFR is down to 53.  Fell 6 points in 2 1/2 days.  From what I'm reading Motrin will make the kidney problem worse.  The usual Hematuria, bacteria, Leuks and now Proteinura showed up Sat.  and today (after 2 years of hematuria, etc.) the urinalysis shows nothing - but the GFR continues to drop.  I guess it is a secret.  Again, no one will tell me what is going on and giving me a lot of B.S.  Yet they are very panicky and keep sending me to ER for more tests.  I began to take a diuretic on my own.  Heart hurts less and I can breath better. They aren't telling me anything about my heart either.  Is this supposed to make me less stressed?  I'm not stupid.  Everytime they suspect something major, I get this treatment.  Sooo tired of it.  I really need to move out of this area.  I'm about to take the Motrin and call it a life (not really nono ).  This is nuts!  My girlfriend died from lupus like this.  I want to call her mom but don't want to upset her.  Still something more needs to be done.  Thanks for your concerns, it means a lot - Kristin

CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 5/15/2007 6:49 PM (GMT -7)   
P.S> p/t work- no insur. - no rheumy. Single mom with 2 kids and can't afford one. $ is everything here. Thanks -Kristin

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/15/2007 7:33 PM (GMT -7)   
That really stinks that you have these serious health issues and no insurance - so that is why you are having to go to the ER when things get really bad. You are right about NSAIDs and kidney issues. I just had very mild kidney issues and was told not to take them, so I would definitely think you would not want to take them.

I'm really sorry that you aren't getting any better. As sick as you are is there any chance you could qualify for disability? I know it's nothing anyone wants to do, but it would at least give you the medical coverage that you need.

Hang in there. I'll say a prayer for you.
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; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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



Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 5/16/2007 9:27 AM (GMT -7)   
Hi Kristine,

I would ask to get checked your complement levels. They are related to a type of cardiac edema, that can cause some of these symptoms. I am sorry no one is listening and I can relate. It took 3 years for diagnosis of Porphyria for me and hearing it is all in your head, or you could have it but so rare you probably don't. I wish I could do something for you. Next time you are in the ER and go through this ask to speak to a patient advocate. I would also call the administration and complain. Maybe complaining will help. I know someone who did the same and she is now getting responses from the hospital and they are working with her too. I hope you feel better soon.

Leta
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.


monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 5/16/2007 9:59 AM (GMT -7)   
It is SO frustrating when physicians treat you as if you know nothing about your self. And they assume that anything you have learned about your condition was learned through faulty information on the internet.

Its just so darn hard when we are faced with criticism, skepticism and doubt, let alone the illness we are dealing with!

Might be a good idea to carry your medical records with you. I don't do this now, but thinking about the situation, it might be a very good idea.

Sorry you are feeling so sick, you will be in my prayers. I know that people say that often, so we don't think much of it. But during times of stress, just imagine all the wonderful people here sending healing thoughts and prayers for you, wrapping you in their arms and hearts.

Darlene
Chronic Fatigue 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 5/16/2007 11:19 AM (GMT -7)   
Prayers always help and so do the hugs.  It is basically what I live for.  Disability here is different and so is welfare health insurance.  Since my kids are covered by their father and I am not, I do not qualify for these benefits.  They do not have "adult" health insurance for us poor people.  Just child insurance.  At least someone gets it.  Been working part-time as a Paralegal but physically I can't work full time to qualify for benefits.  The old catch 22. 
 
Never heard of heart edema.  Did a chest x-ray to check for pericarditis (again), but it was okay - or so they say.  I guess it would have showed up.  I hope it doesn't complicate my MVP and mild regurgitation.  It sounds like heart insuffiency would complicate matters.  Wish I were a doctor or had some clue how this works.
 
No complement levels checked.  I remeber having moderate IgM. Dr. checked to see if my ANA went up more but no results yet.  I already know I'm in flare mode.  Had the flu 2 weeks prior to this episode.  As always unexplained flu then 2 wks. later BAM!  At least I'm consistent with something. 
 
These are great thoughts - thank you!  I definitely will take your advice and talk to a patient representative at the hospital. 
 
Lots of Hugs right back!  Kris 
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 03, 2016 4:57 PM (GMT -7)
There are a total of 2,732,289 posts in 301,006 threads.
View Active Threads


Who's Online
This forum has 151168 registered members. Please welcome our newest member, 14YearOldKid.
267 Guest(s), 13 Registered Member(s) are currently online.  Details
Chask, notsosicklygirl, bluelyme, Pirouette, Girlie, UserANONYMOUS, LG13, Faustmann, ChickNorris, BostonMarigold, Malone26, multifacetedme, julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer