Discussions By Condition: I cannot get a diagnosis.

Dr. treats me like I'm crazy!

Posted In: I cannot get a diagnosis. 22 Replies
  • Posted By: Tabaitha Brown
  • March 22, 2007
  • 01:23 AM

My illness started in 2002.I had pain on the sides of my heels and pain with deep breathing .It never went away.I could not lay on my back and breathe because it hurt too bad.Then the pain went into my right hand ,shoulder, and elbow.My muscles felt like they were always pulled.The Dr. said I had Fibromyalgia.He put me on anti-depressants that didn't help.So I just decided this is something I'll just have to live with.But now my legs are going numb and I can't walk.So is my right hand and my face.My body will start to tremble.After 3 weeks practically in bed my legs seem to be working again.The only thing that makes my pain go away is steroids.Would steroids make Fibromyalgia pain go away? Of course as soon as I am off the steroids the pain comes back.The doctors just say I am depressed and won't help me ,exspecailly since I am self pay.I am only 29 and I wish some one would help me because i am afraid i am going to end up in a wheel chair.I was just now able to get some test done.My ANA test came back neg. and so did Rheumatoid Factor and Lymes.My MRI is normal. My blood shows some inflamation but my test before didn't show it.So the Dr. pretty much thinks I am crazy,because if I was really sick it would show on a test, Right? WHY WON'T MY BODY SHOW WHAT I FEEL???????

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22 Replies:

  • Have they tested you for Lupus? It sounds like Fibromyalgia. Your symptoms sound very familiar to me too. God be with you. Did they do an MRI to rule out MS? I had that done, too!
    princessandfrogs 1 Replies Flag this Response
  • Yes the ANA blood test was to check for Lupus and it was neg. and the MRI was to check for MS and it was also NEG. If this is Fibromyalgia is it normal with this illness to lose mobility and steroids take the pain away?
    Tabaitha Brown 31 Replies Flag this Response
  • I do not know about steroids, my doctor never ordered them. However, I have a friend who recently died of Lupus and in 23 years of suffering she NEVER tested positive for it. Start a journal of your diet, and your activity and your symptoms and track a pattern! Ive started that to see if it helps the doctors!
    Anonymous 42789 Replies Flag this Response
  • Thank you for your reply.How did your friend finally get diagnosed with lupus if she tested neg.? That is the problem I am having.They say I have Fibromyalgia and it doesn't progress and it doesn't do any damage,but i am progressing.I went three weeks unable to walk and horrible muscle spasmto the point i could not even hold a glass or go to the bathroom un assisted because i shook to bad.Any way I just have to rest in the fact that God is in control and He knows what is wrong with me and mabey He will lead me to the right Dr. one day who will care about me.
    Tabaitha Brown 31 Replies Flag this Response
  • I don't know if this will help anyone, but I was sick for so long and diagnosed by regular doctors as having somatization disorder (all in your head). I went to a naturopath and was diagnosed with Celiac Disease. Also, thyroid or vitamin deficiencies can do horrible things to your body if they go on long enough. I feel so deeply for anyone else suffering with something that their body just won't give up evidence for. It is so frustrating to lie at home and deteriorate no matter what you do to correct it and still be told it is in your head. There are so many different things that can happen to the immune system. I admire the person who has faith and believes that they will be presented with the right doctor when the time is right. I wish that I had that kind of faith. My trust has been so devastated.
    Anonymous 42789 Replies Flag this Response
  • You mentioned being put on antidepressants- how long were you on them, and did you stop taking them? There are serious withdrawl symptoms associated with SSRI withdrawal, for example, unless the dosage is tapered down. Too many times patients just decide to go off their medication without consulting their pharmacist or doctor and suffer significant withdrawal. This is because the body becomes acclimated to the medicine and cutting off the supply is a shock to the system. With anti-depressants, especially SSRIS (Paxil, Prozac, etc), the discontinuation of the drug causes a change in brain functionality that can result in seizures, headaches, numbness, etc. I am NOT suggesting you have incorrectly gone off medicine however. Some of your symptoms also seem to be that of Parkinson's Disease or Multiple Sclerosis. Have you been to a neurologist and had thorough testing done? Don't let a general practitioner "conclude" anything and take that as a final answer. Demand to see a specialist dealing with the types of problems you are having. I've seen far too many instances of the GP thinking they can single-handedly manage all kinds of disorders. Not to knock the GP, but they aren't specialists; they can only do so much with any given problem because they choose not to specialist.
    Anonymous 42789 Replies Flag this Response
  • Doctors are not all mighty. They only know what they are taught. A somatization disorder means disorder unknown to them. Human bodies are not machines that are combined of replacable parts. You may forget we all have a spontaneous healing ability for our body and mind. You are your own best doctor if you keep faith on yourself.
    Anonymous 42789 Replies Flag this Response
  • Tab, I am going thru the same thing as you, and have also been diagnosed with FM. I have focal pain in my upper left ribs every time a take a breath. I have also exprerianced numbness in my arms and legs. I finally had the diagnoisis of FM removed becuase my pain is focal and not widespread which is the case of FM. I think FM is just a catch all diagnosis that dr's give when they don't know or don't care to find out whats wrong with you, I also have a 2cm lump in my neck and a 4cm lump in my upper back. My dr stopped testing me for anything. ( I have Kaiser) I been dealing with this for 4 years now and have been to the Dr 14 times and have only had my blood tested once about 2/12 years ago, had some x-rays taken, but they refuse to give me an MRI. Anyways I sympthize with your pain completely, but I have no answers or even suggestions except that don't let them contiune to blame FM for your pain!
    Anonymous 42789 Replies Flag this Response
  • Good point, Lily. There are many paths to healing, and sometimes when we can't get answers from Western docs it is time to try an alternative approach. ESPECIALLY when they have the gall to tell you it's "all in your head"! I am a Doctor of Oriental Medicine and see a lot of patients who have given up in many ways, and have had no relief after trying every possible Western treatment available. Acupuncture and Chinese herbal medicine treats illness in a very different way, and can be extremely helpful for some people. Please think about other ways to approach your illness and your path to wellness. We are seeing an insane array of autoimmune diseases in the world today. There needs to be a different consideration of how the immune system and nervous system communicate and interact. Please read about Dr. Devi Nambudripad's form of treatment called NAET. Say Goodbye to Illness is a great book she has written and I recommend it for anyone with baffling, undiagnosed problems. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • It could be something more rare like stiff person syndrome. The muscle spasms sound somewhat like it. Are you in a major city? You need specialist neurologists as severe as your symptoms are. Have the blood work done for the GAD antibody if you a doc that will order what you request.
    Anonymous 42789 Replies Flag this Response
  • HAve them test you for Lyme Disease and coinfections, they aren't tested for in normal blood work. They have found Lupus, Ms, Fibro, and more are undx'd Lyme. Do some searches and you will see the truth. Good luck.
    Anonymous 42789 Replies Flag this Response
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  • Keep pushing your doctor and don't give up. They always assume you're "crazy" when their common tests are come back negative. Seems to me like doctors (at least those with many years of experience) think they've seen everything and don't even want to consider the possibility of a less common explanation, because it might mean actual work on their part. Instead, they're rather just chock it all up to "anxiety" and whatnot and claim the patient is imagining these problems. Good luck.
    Anonymous 42789 Replies Flag this Response
  • Thank you for all the advice and encouragement.It is very hard to be in pain and lose your mobility, exspecailly when you have children to care for,but I know God will get me through this because He promises his strength is made perfect in weakness.And I am sure week!!!!!:)
    Tabaitha Brown 31 Replies Flag this Response
  • hello... i just wanted to let you know that i just read on another thread that this lady who has been diagnosed with lupus never had a positive ANA... the only thing that indicated it was her high sed rate. as far as doctors thinking you are crazy, some doctors try to convince me that i am not sick sometimes or that my pain is insignificant... yet, i have survived bacterial meningitis with septic shock (multiple organ failure, on a ventilator, several blood transfusions, in a coma) and then once i got through the critical stage of that, i had to have bilateral below the knee amputations because of lost blood flow to my feet. now, if i tell a doctor i feel sick... wouldnt you think maybe he'd take that seriously?... since my basis for comparison is, well, almost dying from meningitis. or that maybe if i told him i was in pain, he'd think twice about it since my basis for comparison is having my legs sawed through and walking on hard plastic prosthetics with metal feet?i have learned the disheartening fact that doctors are not always doctors for the right reasons. you usually have to invest quite a bit of time to find the diamond in the rough. the only thing that keeps me going and should keep you going is that one day, when you do find that diamond, your life will truly be enriched and you will have back the peace of mind you lost.
    Anonymous 42789 Replies Flag this Response
  • Thank you so much for your reply.Wow you have really went through alot!!!And for the Dr.'s to still treat you that way after you being so sick is so sad to me.I was in severe pain and my muscles were jerking around and my husband had to take me to the emergancy room because it really scared us.The Dr. walks in and says"Look, you are not even treating me like a person! You won't even look me in the eyes!" I told him I was in pain and I couldn't control my muscles.I could not believe He was treating me this way , when I was suffering so much .Then after no test and me sitting there 5 min. ,He said I was just depressed.So we left with me in the wheelchair still my mucsles jerking around and in terrible pain.It is scary to me when i think about suffering and no one will help me.
    Tabaitha Brown 31 Replies Flag this Response
  • The last unregistered user is by far, an inspiration. Surviving something like meningitus and then going through everything else...amazing. It is pratically a crime that a doctor wouldn't take anything you say seriously in light of what's happened.But then again, that's how they are. Last year, while getting my hair coloured, I overheard a conversation between another customer (client?) and her hairdresser. The employee was asking how the family was, how the kids were. The customer mentioned that her daughter was doing Residency at a hospital, and how difficult it was. Why? Apparently because the daughter still had a heart and compassion for the patients she was dealing with. Apparently her Supervisor kept telling her, "You have to learn to remove yourself from the human aspect and treat them as a medical case." That truly bothered me, hearing that. It's sad really, because it's true. Instead of dealing with patients as human beings with real lives and real problems, doctors remove themselves from the equation and instead are glorified pill pushers. They don't really care because it's not them with the problem, and if the symptoms don't fit with their experience then it's obviously "all in the head".Now I'm sure there are still some great doctors out there, and even the "bad" ones aren't necessairly horrible, but it's just a sad situation overall. At the very least, if doctors treated their patients like human beings, they might be a bit more concerned and involved with the treatment and illness. Don't give up trying to find out the problem, you deserve better.
    Anonymous 42789 Replies Flag this Response
  • I am pretty sick of Dr,'s and I don't even want to go to another one.I know I am not thinking right ,but I can't help it.The Dr.'s are what keep me upset.My Dr. referred me to a Nuerologist,and told me to make an appt.So I called to make one and they said He wouldn't see me until I had an MRI.So I had the MRI and they said they wouldn't see me because i was self pay.This upset my Dr.and she called them because i can't even walk.She called me and said we would have to look else where for some one decent.The next day that same Neurologist called me and said they agreed to see me but i had to pay for my new patient and EMG up front(which I planned to do),but I told her that if I am going to pay 300.00 ,I'll pay it to some one who can at least pretend to care.
    Tabaitha Brown 31 Replies Flag this Response
  • Hi Tabitha. I'm also quite sick of doctors for the same reasons you are and can totally understand your fustration. Don't fret about the neurologist issue- you can see another who WILL give you an appointment. The important thing is that you have the MRI so most of the work is already done. Though I've never heard of a doctor's office NOT seeing a patient because of self-pay; you'd think that they would LOVE the idea of getting their full billing rate for a change. Don't give up no matter what. Doctors don't really care about you because it's not their life. Patients are just a "case" for them, not an ailing human being. I can recall overhearing a conversation in the beauty parlor a few months back between one of the stylists and her client. The client had a daughter in medical school going through Residency. Apparently the daughter was having a lot of problem because she was "so concerned with all of her patients. Her residency coordinator keeps tell her that she is suppose to 'forget the human issue and just view them as a symptom.' " It's really sad to hear that, and I had to resist the urge to speak to the mother and discuss how accurate it is. Doctors, like many other specialists, seem to loose their "humanity" after enough time in the practice. The key is trying to find one who hasn't- a doctor who has worked for many years but who genuinely cares about his patients. Don't give up, you WILL find someone who treats you with respect.
    Anonymous 42789 Replies Flag this Response
  • Sorry about that; looks like my last comment was more-or-less posted twice. I submitted the first one over 24 hours ago and assumed it wasn't going to be posted.
    Anonymous 42789 Replies Flag this Response
  • My illness started in 2002.I had pain on the sides of my heels and pain with deep breathing .It never went away.I could not lay on my back and breathe because it hurt too bad.Then the pain went into my right hand ,shoulder, and elbow.My muscles felt like they were always pulled.The Dr. said I had Fibromyalgia.He put me on anti-depressants that didn't help.So I just decided this is something I'll just have to live with.But now my legs are going numb and I can't walk.So is my right hand and my face.My body will start to tremble.After 3 weeks practically in bed my legs seem to be working again.The only thing that makes my pain go away is steroids.Would steroids make Fibromyalgia pain go away? Of course as soon as I am off the steroids the pain comes back.The doctors just say I am depressed and won't help me ,exspecailly since I am self pay.I am only 29 and I wish some one would help me because i am afraid i am going to end up in a wheel chair.I was just now able to get some test done.My ANA test came back neg. and so did Rheumatoid Factor and Lymes.My MRI is normal. My blood shows some inflamation but my test before didn't show it.So the Dr. pretty much thinks I am crazy,because if I was really sick it would show on a test, Right? WHY WON'T MY BODY SHOW WHAT I FEEL???????i had the same problem,feeling as though i was crazy,but ask your dr to test you for systemic lupus after 4 years of feeling crazy that is what i had,you know your body better than anyone your not crazy they are hang in there.
    Anonymous 42789 Replies Flag this Response
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