acute and chronic pneumonia with lung necrosis

    • Anonymous
      October 23, 2009 at 12:33 pm

      I’ve been reading others posts for months and keeping you all in my prayers, but feeling unable to respond otherwise as my energy has been depleted for months.

      Finally after two lung biopsy procedure, my diagnosis is as above. After much complaining on my part abt being short of breath and initially thinking it was short of energy and due to IVIG decrease, drs started to re-look at x-rays and a ct scan and decided that something was indeed going on. It was noted that from June to July that I had increasing numbers of bilateral lung nodules.

      Due to high fevers, chills , low energy and violent coughing, with clear lung sounds my pcp said it must be interstitial pneumonia, and I was treated with antibiotics. The fevers and coughing decreased, but I still couldn’t catch my breath so I went to a local pulmonologist who really didn’t know what was going on but suggested possible sarcoidosis, and let’s watch it.

      In sept test showed nodules had again increased both in size and number, so first I was hospitalized for a CT contrast allergy and a bronchioscope to take small samples from my lungs.

      That test did not yield anything fruitful, so I was sent to the local teaching university hospital for thorasic surgery. The conclusion from removing a few sizable masses from my left lung last week is acute and chronic pneumonia causing tissue necrosis(tissue death).

      No one at the teaching hospital seems to have any knowledge abt CIDP, or my accompanying siezures, and the staff neurologist seem to think he could explain any neurologic weakness away due to my history of being abused as a child. In other word, it’s all in my head. Fortunately for me, the dead tissue in my lungs was actually granulated and dead and not in my head.

      So next week I go back to the teaching university to see an infectious disease doc who will start some kind of treatment for the pneumonia. In the mean time I’m weak, tired and presently very sad over the process, and loss of many months of decent function.

      I’ll keep reading others posts and praying for your progress, unless I start feeling some better, I may not write again for a while.

      Have any others had pneumonia experiences with CIDP?

      Thanks for reading this far,

      Erin

    • Anonymous
      October 23, 2009 at 5:13 pm

      [QUOTE=Erin]

      No one at the teaching hospital seems to have any knowledge abt CIDP, or my accompanying siezures, and the staff neurologist seem to think he could explain any neurologic weakness away due to my history of being abused as a child. In other word, it’s all in my head.

      I’ll keep reading others posts and praying for your progress, unless I start feeling some better, I may not write again for a while.

      Have any others had pneumonia experiences with CIDP?

      Thanks for reading this far,Erin[/QUOTE]

      [FONT=”Book Antiqua”][COLOR=”Sienna”]I don’t know anything about your sort of pneumonia/lung problems. What I would like to stress to you … PLEASE find a different neuro. I was hopeful the old “all in your head” — i.e. ‘you’re crazy’ — docs had retired or been booted out. Apparently not. And, of course, you’re a woman … makes it doubly “all in your head”. As I said … PLEASE find a different neuro.

      I wish you all the best. Please let us continue hearing from you.[/COLOR][/FONT]

    • KatyK
      October 23, 2009 at 8:26 pm

      I can’t imagine the disstress you are going through.
      The Primary Care Provider should know that a cold, flu, infection of any kind and your very very serious pneumonia can make CIDP worse.
      If they have decreased your IVIG that seems to be the worst thing they could do.
      You need a good neurologist who understands CIDP and can help with the complication of seizures and who can work with the infectious disease doctors to stop the necrosis that is going on ASAP.
      They made need to increase your IVIG and add other medicines for the CIDP as well as treat the pneumonia and the very serious complications.
      With a serious nerve disorder like CIDP and pneumonia that has advanced to such a serious level along with unexplained seizures you need a team of specialists.
      I am going to say special prayers for you and call on a special prayer group to help lead you back to health!
      I am sure someone with more knowledge or practical suggestion than I can offer will answer your post and be able to help you more.

    • Anonymous
      October 23, 2009 at 9:28 pm

      I agree with rocky36. find another doctor. it seems like the lot of us have two scenerios that haunt us either the dreaded hysteria indictment or some awful inexplicable test result but if nothing fits into some check list than no pragmatism, deduction, induction. no critical thought or reasoning will bring these doctors around because they simply dont want ot take the time or effort to venture beyond the 15 minutes they are aloting you to state your case. I believe that they measure their success on the size of their house and not the health of their patients.

      I am sorry I hope they get to the bottom of this and give you some relief. god bless you