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purplepansey
New Member


Date Joined Aug 2007
Total Posts : 10
   Posted 8/20/2007 9:47 PM (GMT -7)   
confused  Hi,
I am new to the board and do not know where to start.
I have been seeing Dr's for years and each of them have a different diagnoises for me.  I have Copd, dematographic skin, tachacardia, sleep apnea and etc.  My main concern is that I have had a positive ANA for several years, blood in my urine and severe bone pain.  I can not stand to be touched at all.  I have drop foot on my left side, so I fall allot.  I have had a red patch on my left breast and I have seen several dermatologist with each of them saying something different.  I have also had 3 biopsies and no one can tell me what is wrong.  I have severe like electrical shocks in my both thumbs and across 3 fingers on my hands.  I am on oxygen at night and a by-pap.  When I take meds, I usually have a reaction to most chemicals.  Even my inhaler burns my throat and I end up with an upper respirtory infection.  I have seen a therapist for about 6 years for panic anxiety disorder.  I can walk into a grocery store or somewhere and just start crying due to the smells.  I have a lesion on my left frontal lobe which the nerologist took an eeg and said that my brain goes so fast that he could not read the eeg.  He took the eeg 3 times and told me that I am just too nervous.  I fell asleep during the test so I did not feel that I was nervous.  The Dr's don't want to see me because my blood tests don't show any markers for anything.  I have 2 sisters that are also like this.  I guess what I am wondering is does anyone else have any of these symtons and do the Dr's act like this.  Because they don't know what is wrong just dismiss you, even though the symptons continue.  Are these systoms of fibro.
My CRP has been elevated also.  This tells me that I have inflamation somewhere and the dr's just don't know where so they say I have fibro as a catch all or does this happen to others with fibro?
Thanks, I will be willing to listen to anyone as to what I should do.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 8/21/2007 4:10 AM (GMT -7)   
Hello Purple Pansey . . . and welcome to the forum,

Gentle hugs for you sis. You are in a very frustrating time trying to get a dx. Its really hard when you hurt and no-one can figure out how to help.

It does sound like you have fibro + something else. Lots here have overlap diseases including fibro.

If you'll click on the link at the bottom of my signature "Lupus Resources", there is a post in there that gives lots of tips for new members from many of the members here. Maybe something in that post will help.

I'm sure the others will be by to say hello as well. Keep us posted.

Blessings!
In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
Criterea for Diagnosing Lupus:  Lupus Criterea 
Find a Lupus Foundation Chapter near you: Lupus Chapter Locator


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/21/2007 7:06 AM (GMT -7)   
Welcome to the forum purplepansy. You have really had a difficult struggle getting doctors to listen to you. I hope the link Rosie gave you will help you gather some more information. I also hope you'll keep posting and that we can help you and be there for you. Undiagnosed pain is a nightmare and hopefully you'll keep looking for a doctor who will be able to get to the bottom of this for you.

Hang in there!

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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/21/2007 8:07 AM (GMT -7)   
Hi purplepansey and welcome. I'm sorry to hear about everything that you have been going through and that docs haven't been able to figure out what is going on. I can certainly understand why you are frustrated. It's not at all a good feeling to feel like you are being brushed off by docs because they can't figure out what is going on. I agree with Rosie that it sounds like you have something else going on in addition to possible fibro. I'm pretty sure that with fibro nothing usually shows up in labs, so the fact that you have a high inflammation marker and a positive ANA indicates something else could be going on too.

The only things I can think of is maybe a good teaching hospital or a good Mayo clinic somewhere where they can give you a comprehensive work up and use a team approach. It's sad, but a lot of us at this forum had to wait years to get a diagnosis and many of us had to try several docs until we found one that would finally listen and not give up.

Feel free to ask any questions. We're also here for support - we know how frustrating it can be to be sick and be in diagnosis limbo.

I'm glad you joined us and I hope you'll keep us updated on how you are doing.

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; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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purplepansey
New Member


Date Joined Aug 2007
Total Posts : 10
   Posted 8/21/2007 8:50 AM (GMT -7)   
:-)  Hi Always Rosie,
Thank you for the nice welcome.
I will read what you suggested.
Understanding things makes everything a little more bearable.
Thank you again/Purple pansey

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 8/21/2007 8:52 AM (GMT -7)   
Welcome purplepansey... I agree also. You know your body more than anyone and you know when things aren't right. Be it Lupus or something else, if your labs are showing something, than your doctors need to dig further. I had a doc one time just brush me off with a diagnosis and tell me that there wasn't much he could do for me. That pretty much stinks. I hope you can find a doctor that will really take your health seriously... they are out there, finding them is another story. I wish you luck.

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


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sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 8/21/2007 2:57 PM (GMT -7)   
Hi, purplepansy and welcome to the board! Aagh, the old "doctor swing dance", eyes yes I believe MANY of us (myself included) have danced that one! Unfortunately, it seems to be a common problem. Some doctors just are not willing to take the time or effort needed to do their job. Just try not to get too frustrated and certainly DO NOT give up! There are good doctors out there. You just have to be willing to search them out. Best of luck to you! Keep us informed.
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


purplepansey
New Member


Date Joined Aug 2007
Total Posts : 10
   Posted 8/21/2007 3:29 PM (GMT -7)   
yeah  How wonderful to find people who understand and are so willing to share and support each other.  At least physically I may not feel better but emotionally I do.
I am willing to listen to each of your advice.
I think that right now I am also going through a flare due to allot of stress.  My grand daughter just got married, my 4 year old grandson was diagnoised with a brain tumor so we will be taveling to Colorado with 2 weeks of testing with him plus my husband is ill.  He is scheduled for 3 surgeries and has just been diagnosied with the beginnings of Alheimers.  He is 59 years old.  He has diabetics and that has really taken a toll on his health. 
It sounds like a soap opera but unfortunatlly at my age the golden years have not been very golden for us.  I can not let myself get down, I need the strength and support to get through this also.
Thank each and everyone of you. 
You are angels.  ^j^ ^j^ ^j^

monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 8/21/2007 4:23 PM (GMT -7)   
Purplepansy,

I too wanted to welcome you to the site. I also wanted to mention that before I was diagnosed with an auto immune disease, I had many of the symptoms you described, and still do to some extent.

Going into a grocery store is a traumatizing experience at times for me. Between the flourescent lights flickering, the glares from the shiny floors, the odors, the noise....I am a wreck.

I often felt if I could go hundreds of miles into the country and live in an environment that had NOTHING artificial, I could heal.

I am so sorry for the struggle that lies ahead on your path. You have made a wonderful decision for yourself though, to seek others who know what you are going through. Sometimes the emotional support that I find here patches and soothes my soul enough to get me through another day.

Darlene
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 8/21/2007 5:31 PM (GMT -7)   
Hi Pansey,

I'm so sorry your are facing such trial. Please don't forget to look for that "silver lining" in your rain clouds . . . they are very easy to miss, but they are truly there. You do have an awfully big rain cloud . . . so I'm hoping the silver lining is every bit as big.

Keep us posted . . . and REALLY try to pace yourself. The things that I have not been able to do have waited quite nicely for me. My grands know that I can't take them to the beach (sun) or the pool, but we sure do have some campfires in our backyard and they truly enjoy our time in the dark.

Keep us posted!!

Hugs and blessings!
In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
Criterea for Diagnosing Lupus:  Lupus Criterea 
Find a Lupus Foundation Chapter near you: Lupus Chapter Locator

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