Granulomatous Disease...PLEASE READ

Discussion in 'Fibromyalgia Main Forum' started by dd, Apr 21, 2003.

  1. dd

    dd New Member

    I have been compiling all of my medical records from all the doctors that I have seen and also x-rays and lab tests that have been run on me for the past several years. Saturday I sat down and started reading some of the information. I was quite shocked to say the least in what I found out.

    I came across a diagnosis from a chest x-ray that I had in 1998. The radiology report said that I had Granulomatous Disease. I have never even heard of this before...nor was I told by the doctor that ordered the chest x-ray. This x-ray was taken when I went to the ER in 1998. I went to the ER because I could not stop vomiting and had a fever of 102. I had just had all of my wisdom teeth pulled a couple days prior to that so I thought that maybe I had an infection from that. I was at the hospital for about 6 hours and they came back and told me that my x-rays were fine and that I probably had a viral infection...sent me home and said that they would send copies of lab and x-ray results to my doctor. I went to my regular doctor about a week later and he never mentioned anything about the x-ray findings. I remember asking him point-blank if there was anything that I should know about because I still was not feeling well. Keep in mind...I was about a year into my illness of CFS at that time but had not yet been diagnosed. I was told at that time that the reason that I felt so bad was because I was depressed, tired, run down...blah, blah, blah...the same story we all have been told at one point or another. I wasn't diagnosed until 2001 with CFS and FM.

    I am still in the process of researching this disease but I wanted to know if anyone has heard of it...but most of all...wanted to alert EVERYONE TO KNOW WHAT IS IN THEIR MEDICAL RECORDS. There may be a diagnosis out there that you have not been told about until (like me) you read it on a report years later.

    Anyway, this disease...from what I have read so far...IS A DISEASE OF THE IMMUNE SYSTEM!!! This disease inhibits the body to fight bacterial and viral infections and also other infections. It is a genetic disease that usually affects children, mostly boys. One of the main infections is Candida...WHICH I HAVE...I know a lot of us on this board have Candida. One thing that I read that scares me is that people that have this usually don't live into their fourth decade. I just turned 39. But, most with this disease are diagnosed as infants or before the age of maybe I have a very mild form. The cause of death is usually from being septic and the body's inability to fight whatever infection that has invaded the body. Fortunately, after I got the diagnosis of CFS I started a very rigid vitamin and mineral therapy that I devised myself thru researh and trial and error... so I have been getting better for the past 2 years. 2 years ago I couldn't even walk to far without having to sit down and take a break...forget going shopping...I had to use those motorized chairs. Now I feel so much better unless I overdue it, then I pay dearly. But, I have not had any infections for a very long time...not even when the kids come down with a cold or flu.

    I am still trying to make heads or tails out of this and I am so angry at the doctors and that is putting it mildly. I don't know what to do. Do I make an appointment with an Infectious Disease doctor or do I go to an Immunologist??? I want to find out for sure what is going on here. There are treatments available from what I have read. I just find this so aggravating because I spent so many years feeling like s..t and no doctor would take me seriously and now I find this in my records from 5 years ago. One article that I read also mentioned CFS and Lupus in association with this Granulomatous Disease.

    Any input or ideas??? Please, all of you, check your medical records. It is amazing what the doctors WON'T tell you. I think that this borders on the lines of mal-practice...especially since I had been complaining of not feeling well since the end of 1996 and they just dismiss this x-ray finding without even telling me. What a system!!

    Sorry this is so long but I think this is very important information.

    Peace to All,

  2. healthywannabe

    healthywannabe New Member

    Hello. That makes me so mad that that doctor didnt tell you about those findings. It sickens me to the core.I think that is malpractice definatly. Doctors can be so annoying. They are traind to read tests, then if tests dont show anything they call it deppression. But here they even had a result, that makes me so mad!!! I hope you get feeling better and I will be praying for your recovery. peace...ZOe
  3. skychomper

    skychomper Member

    I just wanted to offer my support for what your going through. I don't know anything about this disease, but I do know about doctors not giving you all the information. my normal blood workup with one docter had several items out of range- eosinophils, monocytes, and potassium. but he never felt the need to mention it. I only found out after I had requested copies of my bloodwork to take elsewhere. of course this Granulomatous disease sounds alot more serious. I wish you the best of luck in getting to the bottom of things. hugs!

  4. ForeverFlaring

    ForeverFlaring New Member

    I would be upset too! I have had the opportunity to read some of my medical records and actually they are very enlightening. I would also recommend anyone who can to get copies and read them. You never know what you may find out. I do hope that you can get treated for your diagnosis.
  5. layinglow

    layinglow New Member

    Debbie, my sister was diagnosed with Granulomatous Disease, about 5 years ago. The pathogen that she keeps on hand is Staph, and has recurrent bouts with it. She also has Granulomular Nephritis (sp?)---meaning it has set up in the kidneys.
    She and I both see nephrologists.

    She has never officially be dxed with CFS, although it has been mentioned by her physicians. She has all the symptoms.
    Lately she has been having Fibro symptoms--but is not ready to face the CFS and FMS---she is a stubborn RN--boy, I will probably here about that on this!

    Anyway just thought I would let you know their are others out there with Granulomatous Disease.....
    Best wishes LL
  6. dd

    dd New Member

    to all that have responded so far. Your support means so much to me.

    I am trying my best to not let the anger get the best of me right now. I just keep remembering all the doctors that I have seen that said that I was just depressed, overweight, run down from life in general...and the best one of all...just snap out of it, everyone gets tired once in a while. I feel that because I was labeled as a hypochondriac that anything that I said was not taken seriously. Many of us on this board have been labeled as hypochondriacs because the doctors think we are faking symptoms or are just lazy and don't want to work. I am so mad right now that I can't stop typing. All those lab results and x-rays and MRI's that I have had...all supposedly came back negative except for the positive CMV virus. Do doctors just not care anymore??? Isn't it their job to give us all the details of our matter how insignificant THEY think it might be. Who knows how many other people are out there right now dealing with a disease that they don't even have a clue that they have. This is so enraging.

    While I was typing this I got a phone call back from the immunologist and have an appointment for May 6th. Hopefully I will find out more then.

    I am going to put this anger to good use and get to the bottom of what the heck this disease is and what to do about it.

    Sorry for the rambling. My mind is racing right now.

    Love to all,

  7. klutzo

    klutzo New Member

    I have a PCP doc now who does not call about abnormal lab results....I have to call them every time to get them! Then I have to ask for an explanation and if I'm lucky, I get called back. This seems to be the trend. I don't know if they just don't care because their waiting rooms are full..... so what if you die, there's plenty more where you came from, or if it's because they don't get paid to talk on the phone, or what, but all the new docs seem to have some of these problems.
    I would not mention any legal action when getting a second opinion from the Immunologist, since docs always defend each other. Take your report and the actual x-rays if you can get them when going to your appt. If it turns out your care has been neglected or compromised in any way due to your not being told about this, go home and call a personal injury attorney and sue that bas*ard who said your x-rays were all right. If it was at an ER, sue the hospital too. The atty. will know what to do.
    The only way to get this stuff to stop is to hurt them in the pocketbook. All of our insurance premiums go up when people sue, but some things are worth suing about, and this sounds like one of them.
    I am truly sorry about what happened to you. (((HUGS)))
  8. danisue22

    danisue22 New Member

    Hi Debbie, I to think it's very important to get your records ,Along time ago when I was in the Hospital after the death of my little grand daughter,my Doctor ask this other Doctor to see me in the Hospital when I got the records this Doctor had written {upon visitng patient I find a women dressed in a black neglege still greiving the death of her grand daughter. } This was 15 days after my 3 year old grand daughter died in a house fire. I ask my husband at the time to bring me some pj's from home amd the black night gown was all he said he could find. What the H*ll any of this had to do with why I was sick,I surely don't know.But I would never go to that Doctor on my own.He should have been a writer for some soap opera. Danisue
  9. dd

    dd New Member

  10. dd

    dd New Member

    Bump, Bump
  11. nancyneptune

    nancyneptune New Member

    I had to get all my medical records from the past ten years for my attorney for a lawsuit. I started reading them. What an eye opener indeed!!!Holy mother of god!! I had a blood clot on the anterior wall of my heart in 2000. I had no idea! None. I had had a dreadful attack one night in Jan. 2000 for only 15 minutes. I had a huge squeezing sensation in the back of my sternum, broke out in a cold sweat and the pain was terrific. It went away.
    I asked my gastro doc cuz I have gerd real bad. "how am I supposed to know the diff. between a heart attack and just the esophageal spasms I have." he said let's find out.
    I got sent for a treadmill stress test with the radioactive thallium. The report from the nuclear medicine tech said I'd had an ischemia on the wall of my heart! No one told me!! I had a fricking heart attack! Doctors are idiots.
    [This Message was Edited on 04/22/2003]
  12. dd

    dd New Member

    This board moves so fast sometimes that it is hard to read all the posts.

    I just want as many people to read this as possible because who know what may be in your medical files that the doctors are not telling you. Please, all of you, check your medical records!!!

    Peace to All,