Discussions By Condition: I cannot get a diagnosis.

Need suggestions for better results with drs

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Anonymous
  • January 6, 2007
  • 04:37 AM

I am white female, 54 yrs old. I have a long (16 yr) history of fatigue, joint pain, morning stiffness, body aches that was diagnosed as stress, depression and anxiety related. (Although doctors have told me I'm depressed, I've never felt I was, other than over the fact that my life fell apart because I lost the physical stamina to function efficiently and compete in the workplace). I have taken several anti depressants, that maybe helped my mood, but did not relieve the pain or fatigure.

3 years ago these symptoms gradually became much worse and some new ones appeared. Soreness and aching around my breast bone, feeling of pressure in my chest & throat. Pain in my jaws & throat (deep pain, not a like a sore throatfrom a cold), more like a migraine headache in your throat. Hard red bumps and my cheeks and chin. (Raised, red, mildly sore, but not like acne pimples, they never make pustules) they are slow to heal and often come back in the same spot, especially if I am out in the sun. They sometimes appear on my forearms, hands, back and around my collar bone. My hands ache in cold weather and will turn a funny mottled white/blue/ red color off an on, (worse when it's cold, but likely to do it any time). My right foot is numb is under my toes, both ankles swell during the day, with the skin on the right one turning a blue black color like a bad bruise by the end of the day. My legs and hips ache deeply as though the pain is in bones and feel heavy. Blood work showed weakly positive ANA and EKG was 'mostly within normal limits'. I was referred to a rhuematologist. While waiting for this appointment, my neck and shoulder became sore that I could hardly turn my head, so the GP gave me a course of steriods. This improved all the symptoms more than anything else I had tried. I was still taking the steriods when I saw the rhuematologist. For some reason this doctor seemed to dislike me instantly. He became annoyed when I was trying to explain about the pain in my chest and told me the second EKG done earlier that day was fine. (I was not experiencing the pain when the test taken). When I tried to explain that I could not have any further testing done without applying for Social Security Disability because I did not have any health insurance. He told me bluntly that he did not have any time to waste on people like me, my symptoms were probably related to menopause (If he had looked at my history, he would have seen that I had a hystorectomy 10 yrs prior). He recommended that I ask my family doctor for some anxiety meds and go back to work and get my mind off my problems. He accused my being disappointed because he was not diagnosing me with a 'disease'. His written report dismissed my problems as 'somatic' and I was likely 'internalizing emotional issues".

I was really upset, but I just sort of blew it off and decided maybe he was right that it was all in my head. I went back to the GP and asked to be treated for depression. I tried Wellbutrin, Stratera, and then Cymbalta, but I did not see enough improvement with either to justify the expense and/or side effects of the drugs. I've just been taking OTC pain relievers and living with it.

However, I am getting really scared now. I am the rock of my family. The one who fixes everyone else's problems. I can't be scared. I guess that's why I'm writing this post. I am and there is no one I can talk to about it.
The pain in my throat and chest has now progessed from being an occassional thing to almost constant. (It is not that heart in your throat feeling you get from being anxious). It is like someone is squeezing my throat from the inside. If I exert myself I feel this funny feeling in my throat and chest that I can only describe as a kind of 'back pressure' I can feel my pulse in my throat and the upper part of my chest, it is a sort of flushing sensation and my ears ring. Except for a sort of dull ache that appears late in the afternoon and evening on the left side of my chest, it is not however, it the area I would associate with my heart.

There has been blood in my urine consisently now for about 6 months. When this first showed up, GP thought it was UTI. There was blood in urine during routine check up 6 months ago. I took Cipro for a week. Then in October I developed pain in my left flank and the lower left side of my abdomen. This time I took Cipro for 2 weeks, plus a dose pack of steriods. Pain got better, but blood did not go away. Since the steriods wore off, The flank pain is back along with a deep ache in my lower left side. I am waking up with considerable pain in the upper part of my back. Bilateral, but worse on the left. Gets better after I get up, urinate and move around. Some days I am running to bathroom every 5 minutes, other days I hardly need to go at all. Some days there is enough blood for tissue to be very pale pink, other days it is not visible (but has been positive in the urinalysis.

My legs and arms feel so heavy, it is as if I am dragging myself around.
Everyday household tasks and errands are overwhelming. Sometimes the whole day goes by while I think 'well I'll just rest a little longer and do that in a few minutes' and then it is 4:00 in the afternoon and I'm still in my pajamas.

I have noticed being clumsy, things just seeming to fall from my hands, tripping over my own feet, catching the ball of my right foot on the floor or the ground, even though it is a level surface, because I did not pick the foot up quite high enough. Household items like a gallon milk, the bag of dog food ect. seeming heavier and more difficult to lift than they should.

I've had several episodes of waking up disoriented and not sure of the day of the week. ( I am not taking sleeping pils or pain med that would account for this). Also being suddenly disoriented when driving and not knowing exactly where I am or if I've missed my turn, getting confused on directions to places I've been before. Forgeting dates, missing appointments. I can't get anywhere on time and anyone who wants anything from me before 10:00 or 11:00 am can pretty much forget it, no matter how good my intentions are.:eek:

My blood pressure is normal.
I could stand to drop 20 lbs. I have never smoked. I don't drink,
and I once was an efficient professional person. I am not malingering and looking to get on disability. I am reasonably intelligent, ran a successful business and could do much better for myself than that if I could just feel well enough to function.

The blood in my urine has caused the GP to refer me to an internal medicine specialist. Appointment is Jan 23. I do not have any insurance and the appointment will be very expensive for me. I can't waste another $600.00 like I did with the rhuemaltogist.

Does anyone have suggestions on how to get the most out of this visit or how not to come across as a hypochondriac, or a depressed neurotic nut? Especially because the reports from the rhuemaltogist and others who have said I am anxious and depressed will be in my records. Any insights into why I am being perceived this way would be welcome. I will not be offended by brutal honesty.

Reply Flag this Discussion

5 Replies:

  • read "Never Be Sick Again" by Raymond Francis- read all the articles in this sectionhttp://www.beyondhealth.com/health_education.htmreadhttp://www.ourlittleplace.com/jackimcs.htmlhttp://www.afpafitness.com/articles/LEAKGUT4.HTMhttp://www.mdheal.org/leakygut.htmhttp://www.drcranton.com/yeast.htmand make sure you read on food combining herehttp://www.thewolfeclinic.com/newsletter/newsletter0004.htmlI don't make diagnoses, but I can tell you that most of all of this research is helping me.Tomorrow I am starting to take homemade detox baths-Don't lose hope.
    Anonymous 42789 Replies
    • January 6, 2007
    • 04:58 AM
    • 0
    Flag this Response
  • First, there are clinics at major universities that use sliding scale so your bills wont be so high.See if you can get an appt with an internal medicine professor at a medical university. You have so many complaints that it is hard to know where to start.Third, tell the doc at first you are not malingering, funds are tight, and these symptoms are real (not depression). Fourth, take all medical labs, test results with you. May not need to redo some tests.Sounds like you have a kidney problem AND perhaps an arthritis problem, two different diseases. Do not mention disability at all, just that funds are very tight and are there any places to do tests for free. Steroids masks all the symptoms. Do not go to a doc while still on steroids, he/she wont believe your symptoms as steroids masks pain.Type your history in a chronological manner, starting with first symptoms, and treatment, in a very logical fashion. Give it to the doc (make sure all treatments, meds are on there). Do NOT comment about another doc to him/her. Do not tell him you have been labeled "hypochondriac". Ask him/her to start fresh without a diagnosis already given. Do not blow up at all, hurts your chance of getting good care. Be positive.If you go in being very critical, it throws doc off as to the real problem, and may get you more anti-depressants. Anti-depressants DO help control the pain receptors though, and are used even if no depression is there.Hope this helps. Remember, no emotions, just facts, and be positive.
    Anonymous 42789 Replies
    • January 20, 2007
    • 02:58 AM
    • 0
    Flag this Response
  • Am back. Have you had 5 hr. glucose tolerance test for diabetes. Am a retired doc, interested in helping others.Any fever/chills? Could be a kidney stone or infection. Any urine culture done? gb
    Anonymous 42789 Replies
    • January 20, 2007
    • 03:04 AM
    • 0
    Flag this Response
  • Check your thyroid. You have a lot of symptoms that look like your thyroid might not be working very well. Good luck and I hope you get a diagnosis and help with the pain soon. Don't give up.
    Anonymous 42789 Replies
    • January 20, 2007
    • 04:23 AM
    • 0
    Flag this Response
  • I agree with the thyroid suggestion. I've been having problems for 4 or 5 months and have been doing a lot of research on the internet about it. Look on the internet about thyroid problems if you can.
    Anonymous 42789 Replies
    • January 20, 2007
    • 04:51 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.