Discussions By Condition: I cannot get a diagnosis.

2 years and still waiting

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: DMBordel
  • May 22, 2007
  • 02:55 AM

I have seen many doctors and they have said many things ... but I know there is something someone isn't getting. I do have very mild COPD and severe asthma. I use nebulizer treatments twice a day.
Symptoms:
*cold, clammy, red face - often asked if i have a bad sunburn - sometimes extends down neck and upper back
*profuse sweating everywhere but face mainly
*always hot - must wear my hair up can't handle the heat on the back of neck
*excessive yawning - people comment A LOT about it - even if i am not sleepy
*extreme fatigue - close to having to resign my job - don't know how to explain except to say that at times the fatigue is bad it feels as if my individual muscles are tired
*i will be sitting still - not getting up or moving around and start seeing stars
*IBS - for 16 years - new symptom is bloating for the last 3 months
*chronic back pain - surgery in 2001 - take percocet 10/325 and soma three times a day (and yes i have tried stopping them for a period of 4 weeks and it did nothing back make my life unbearable - no symptom relief just found out that i hurt in MANY places i didn't know was hurting)
*currently having my left ear/sinus checked out because the ear isn't draining - i think this is seperate issue
*blurred vision at times but can't find a pattern
*have to self cath at times because my bladder won't work
*difficulty concentrating and recalling common things that i should be able to w/out a problem like a co-workers name that i see daily - or odd things like forgetting how to spell a common word
*others meds - estratest (hormone dependent since 25), cingulair, cymbalta
I could sadly keep typing but general history:
-double mastectomy with tram-flap reconstruction with complications first surgery december 2002 and last surgery july 2007
-rectal reconstruction may 2006 - after this surgery is when symptoms started
-pneumonia 2/06, 6/06, 10/06 (missed three months of work)
-discectomy on back 9/2001
-right shoulder repair 1999
-rectocelle repair and gallbladder removal 1996
-bladder reconstruction 1994
-total hysterectomy and appendectomy 1992

I am VERY tired of surgeries!!! Right now I just want to know why I always feel bad ... tired ... fatigued ... ache like I have the flu ... different joints hurt at different times.

If anyone knows anywhere I can go to get help ... I am VERY much open! I am feeling hopeless.

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8 Replies:

  • Hi DMBordel,That IS a very long medical history. Sounds like you have been through the ringer.Off hand, I am thinking of two things after reading your post...one, see if you can change pain meds. Maybe something like Ultram and Tylenol or something, might keep the pain at bay without causing you more trouble. The long term affects might be playing into your memory trouble (and maybe other things as well).The second is a strange idea, but something about your description reminds me of something a friend of mine went through after a surgery. For years. She finally found out that the surgeon had LEFT SOMETHING INSIDE of her, and that thing was allowing all kinds of things to grow on it. She eventually figured out where and what, had it removed, and is now feeling surprisingly better.So it is a long shot, but especially considering all this started right after a surgery, it might be worth looking into.But, wow...you have a really unfortunate medical history there. I can certainly imagine how you would feel so tired of surgeries! But the idea that you went through so many, and you were doing OK until that rectal reconstruction, seems worth looking at that closely. What was that surgery for (besides the obvious), I mean, what was the trouble that they were trying to fix?Best,Shula
    Anonymous 42789 Replies Flag this Response
  • I have tried adjustments in meds and it seems after I take one for 6 months or more I start breaking out in rashes and have to swap.The surgery was because, to be blunt, is that I developed an opening between my vaginal wall and my rectum. They noticed at that time that I only had musles on 1/3 of my rectum so they reconstructed it all. I had only been telling them since the delivery of my daughter 16 years ago that I couldn't "push". Sad thing is that about 3 months ago the rectocelle collapsed. I am - well manually - dealing with that rather than attempting a surgical repair.I can't imagine how they could have left something in my rectum though that would be hmmm odd. I wish I knew what was causing all of these problems. I was back at work after the 9 1/2 hour mastectomy and reconstruction in 3 weeks. I am not used to having "low energy".Thanks for replying!!!
    Anonymous 42789 Replies Flag this Response
  • always maintain hopeI know that's a cliche, but mental wellbeing is very important in times of desperation It's what keeps me going
    Anonymous 42789 Replies Flag this Response
  • Many syptoms you reported...I can relate to Have your doc check for CFS/ME heard of chronic fatigue syndrom?...most of us have but don't know much about it at least I didn't until recently there are several on this site alone with very similar symptoms look into it...after 2 years...it can't hurtNoone on this site has mentioned that testing for ME/CFS was negative...most docs aren't looking for it. Best of luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • DM Bordel...the facial redness is referred to as "facial and upper body flushing" I suffer it also...along with many of your other symptoms...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Thanks for the encouragement ... I just wish I could find a doctor that would LISTEN to me. How do you find the correct doctor? I had a family physician for 18 years and switched last year to an internist who I thought might be able to help. I have seen pulminologists, cardiologists, pain management doctors, nuerologists, etc. I just sometimes get tired of fighting the battle. I mean my family physician of 18 looked at me and said ... I don't know. So I left ...
    Anonymous 42789 Replies Flag this Response
  • Wow your medical history is overwhelming. Mine is too and like you I cannot seem to get a diagnosis. I agree with you that one body cannot have 50 things wrong with it. I too believe it must all fit some how into one ailment, syndrome, disease etc. I hope you get relief. I am in the process of going though more and more tests myself and don't think I will get an answer now at 43 anymore then I did when this all started at 25 for me. I have been dealing for almost 20 years with doctors saying "Yeah, there is definetly something going on with you but we just don't know what". Wasn't a problem for 15 of those years as all the problems cleared up with steroid treatments but now have permanent lung issues and severe muscle pains. Testing still going on so really no pain relief yet. I hope things improve for you.;)
    wfa7500 1 Replies Flag this Response
  • dear above unregistered...my doc of 5 years would not listen to me. I made sure I had MY OWN copies of every test I ever had I made a timeline of my symptoms I researched and found my own diagnosis by symptom checking on google I typed 2 pages of my symptomsI typed 2 pages of tests I went to new doc...a friend referred me He spen 2hrs and 15 mins with meHe listened to meHe read the 2 pages of symptomsHe turned the page to two pages of testsHe examined me...thoroughlyHe made me make appts withmammographyOncologyHematologyNeurologyOB/GYNbefore I left the building He wrote as my first diagnosis on my sheetChronic Fatigue Syndrome as first diagnosis without any testinghe knows...I have over 70 symptoms He sent me a hand written note today...I hope you are doing well"nice...along with it, a lab sheet saying a test he had done came back as he suspected...not as normal get a new doc...ask around, people are willing to tell you who is good and who is not Good Luck with it all...mommy cat
    mommy cat 1654 Replies Flag this Response
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