Discussions By Condition: I cannot get a diagnosis.

Mystery disease - please help

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Anonymous
  • April 22, 2008
  • 10:53 PM

Hello - I need help badly. My husband is currently in the hospital again, and the doctors are puzzled. Can not get a diagnosis. Here are his specs:

Male
Age 53
Sudden onset of severe headaches in right temporal area on Nov 29, 2007
Pain is so severe it causes vomiting
If pain is not bad, he can eat and keeps food down. If pain is severe, everything comes up.
Random relief from pain meds - sometimes Ibprofen works Ok for a short time, sometimes Vicodin works, most of the time the heavier pain meds don't work and make him throw up for 3-4 days afterwards.
Was in emergency room Nov 29th. Diagnosis was Bell's palsy because right eye could not close and right side of face was drooping. All other body parts on right side were not affected. Pain was severe on right side of head.
After much testing and throwing out possible causes for head pain, Doctors thought perhaps an ear infection was going on, even though fluid in ears didn't look that bad. Did have an infection in the mastoid area behind right ear, but again, not bad enough to cause this severe of pain. Could not see swelling or redness on skin behind ear. Tubes were inserted in to both ears. Pain did subside. Husband was on interveinous IV treatment once a day for three weeks after discharge from hospital. Pain was gone at this time and no pain until mid March. In Mid March, husband complained of severe pain in his right hip area similar to symptoms of a sciatic nerve problem. Head pain returned within days afterward and became severe again. The pain is 24/7 - never lets up. Pain meds to not seem to work to take the pain away much at all.
Pain in right hip area seemed to let up as the head pain became worse. But husband would mention that his back hurt (right area over kidney) when getting in or out of vehicle.
When we went to Urgent Care, they palpitated lower stomach area and it was tender on the right side in the groin area. The Doctors thought perhaps he had a slight hernia from throwing up so much and such severe dry heaves.
An ultrasound was done on that area - then an xray or ct scan - everything looks clear - no hernia, no colon or intestinal problems.
An MRV was done on right head area and all looked clear - no tumor, no blot clot.
White blood count is currently between 25,000 and 30,000
Platlet count is very high - over a million I believe currently
Sediment (?) rate is over 90
He is peeing and pooping fine - no trouble there. No vomiting unless the pain is there. Any pain pills given by mouth make him vomit. Right now he is hooked up to IV fluids, has an IV antibiotic infusion once a day and is self-medicating for the pain by pushing a button to release pain meds in to his system through the IV every 8 minutes. Pain is still constant and he gets little relief even by taking pain meds this often. He also has a pain patch on his back.

A flu shot was given two days before the onslot of all this head pain back in November 2007.

Any questions, help, suggestions at this point would be much appreciated. Doctors mentioned today taking a whole body scan so they could pin point where the majority of white blood cells were clustered, hoping to find an infection. They are not sure if the head pain is caused by the infection, or if two different things are going on.
Same symptoms this time as back in Nov, except no new facial sagging. By the way, face still has the same droopy eye and mouth. We've gone through eye infections and having his eye sewn shut to save the eye from drying out.
It appears there is an underlying infection, but every xray comes up short and shows nothing. They are also talking to blood specialists and infectious disease docs today.

The doc did think perhaps Wegener's disease, but lung xray and blood work came back all clear.
So much more I could add, but ask questions as needed if you need clarification.

Thank you,
Cindy Murdoch

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8 Replies:

  • how truely aweful for your husband... A flu shot was given two days before the onslot of all this head pain back in November 2007. I wonder if it's just a coincidence the timing of your husbands illness after that or not? Vaccinations affect the immune system and can trigger or start of many things. I'd keep an open mind that the vaccination could of triggered something even thou most doctors would deny that. Some kind of poisioning from the vaccine???????? (there are bad ingredients in them and stuff can go bad.. headache.. neurotoxins of some kind???? some kind of infection producing neurotoxins etc). I hope they are able to work it out.
    taniaaust1 2267 Replies Flag this Response
  • First of all, let me say that I am terribly sorry to hear what your husband is going through. That is absolutely awful. A few thoughts:1. Have they tested for lyme, mumps, and TB?2. Have they tested for cancer, polycythemia vera or myelofibrosis-osteosclerosis?3. Have they tested for Guillain-Barr Syndrome? While incredibly rare, the onset has been linked to flu shots. I wish you both the best.
    GD2005 61 Replies Flag this Response
  • First of all, let me say that I am terribly sorry to hear what your husband is going through. That is absolutely awful. A few thoughts:1. Have they tested for lyme, mumps, and TB?2. Have they tested for cancer, polycythemia vera or myelofibrosis-osteosclerosis?3. Have they tested for Guillain-Barr Syndrome? While incredibly rare, the onset has been linked to flu shots. I wish you both the best. Yes! Guillaume Barre is linked to the flu shot, though the symptoms seem different from classic GBS, the droopy face is indicative. All of the above suggestions are important. Did he have any trouble breathing during this ordeal? Does he have any history of sinusitis or allergies? Was he taking any medications before the initial episode? DOM
    acuann 3080 Replies Flag this Response
  • I will ask the doctors this afternoon about testing for the diseases listed. He was not taking any meds prior to the illness that began in November. He was weaned off Coreg and Zocor a few months prior. He is type one diabetic and takes Lantus and Novalin R.Although we live on a farm in Oregon, our location isn't one where you would commonly be thinking Lyme disease - we are at 1,000 feet elevation, have guinea fowl that eat ticks & bugs, and he spent most of his time inside. I wondered about WNV actually, but he wasn't outside.No respiratory problems prior to all this. He showed small signs (slight sniffles that never seemed to go anywhere) two days after the flu shot. Those sniffles never developed in to cold symptoms or anything else except the head pain. No history of sinusitis. Seasonal allergies only if in the valley in late spring.Haven't tested for mumps (shows no signs physically of having mumps) or TB.They have ruled out cancer or a malignacy at this time. Do not know if tests for the other diseases have been done, but I will ask.No cell tower close by and he doesn't use any electronic devices of any kind - no cell, pager or anything like that. No hearing aide, nothing.I had one of my clients mention Lyme to me today, so will follow up on all of this today when I return to the hospital.The IV antibiotics that he is on currently are lowering the white blood cell count and also the platelet count is better. The pain is better. So that indicates that the infection is causing the head pain. When the infection is battled back by the antibiotics, the pain goes away. When the infection comes back, the pain returns. He actually asked about food last night and ate dinner (and kept it down). And he didn't push the button for pain meds nearly as much in the last 12 hours.Today the blood specialist mentioned bone marrow problems - infections in the blood. They are doing blood tests today.Thank you for your input. Any other ideas, please send them my way. This is so frustrating and painful to watch a loved one go through this - not once, but twice now. We need to find the source and cure that.Cindy
    Anonymous 42789 Replies Flag this Response
  • Have they ruled out giant cell arteritis, polymyalgia rheumatica, polyarteritis nodosa, churg-strauss syndrome, lymphoma, leukemia, lupus, syphillis, polycythemia vera, rheumatoid arthritis... other things?Sorry this is such a big laundry list. Perhaps you can google these or look them up at this site and see if any of them match up better than the others. I imagine that they are actively looking for these.Have they done any bone scans? Gotten rheumatology, hematology, or infectious disease consults?One thing you might try is the multiple symptoms checker here, entering in the most obvious complaints.This probably isn't much help, and none of us are doctors here.Good Luck. I am so sorry you guys are going through this and hope they find answers soon. Please keep us posted.
    Anonymous 42789 Replies Flag this Response
  • The docs think that they have a diagnosis. Temporal Arteritis. Biopsy was this morning, test results to come back Thursday.
    Anonymous 42789 Replies Flag this Response
  • this sounds very much like a CLUSTER headache. the pain is very severe and debilitating, and it comes on suddenly without warning. and, i believe they are more common in men than women. as you said, usually, there is a drooping eyelid with tearing and runny nose. look it up on the internet. there is plenty of information out there. good luck.
    Anonymous 42789 Replies Flag this Response
  • The docs think that they have a diagnosis. Temporal Arteritis. Biopsy was this morning, test results to come back Thursday. That's classic - inflammation of the temporal artery...but it tells you essentially nothing about why, how, he developed this problem.:( According to Traditional Chinese Medicine, it is not uncommon to have an infection or "pathogen" lodged in the energy pathways of the body. The pain along the sides of his eyes and also along his buttock area correspond to ONE meridian: the Gallbladder meridian. This does NOT necessarily mean he is having gallbladder organ issues... Acupuncture may really help get him back on track...please research this and consider Oriental Medicine as it can often help where allopathic cannot. www.acufinder.com for info and to find a qualified practitioner near you. Best wishesDOM
    acuann 3080 Replies Flag this Response
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