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Bedridden Mother Needs Help With Diagnosis

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shakedog
shakedog

We have been trying to diagnose my mom for close to 3 years now. She has had just about every test under the sun, has had about 10 doctors look at her and at this point, her current doctor suspects she has trigeminal neuralgia. She has tried one medication for it and that didn't work and is now testing a second one. Perhaps some of these symptoms might stand out to someone reading this:

Initially, she started experiencing mini or partial brain seizures. They range in intensity from a state of confusion to falling on the floor and not remembering how she got there. There was also a pain that radiated from her temple down to her jaw, however she had some major dental work done recently and that seems to have solved that issue.

As time wore on, we started noticing a decline in her short term memory, confusion became more prevalent, and just recently, her face is feeling hot and she is frequently dizzy now.

Things are definitely getting worse. We have a huge binder full of tests she has had, including numerous CT, MRI, Xray (which did show some arthritis in the neck, which led the doctor to consider a compressed nerve somewhere, but that isn't conclusive), blood tests, etc., Her vitals check out ok and she isn't vitamin deficient and nothing obvious is sticking out. Tumors have been ruled out as well, unless they aren't seeing something important.

Understandably, we have been frustrated, trying to lock down the source of this problem for over 3 years to no avail. We live on the Big Island of Hawaii and it is well known that health care is lacking which has no doubt added an extra layer of difficulty in trying to get my mom well again.

Any suggestions, given the symptoms would be great. There is simply too many reports to include everything here, but I'm happy to add more clarification for anyone who is interested. Thank you. 

PS - I've filed this under neurological disorder which seems to  be the correct category given most of these issues are head related, but considering we have no diagnosis, that may not be the case.

0 likes, 7 replies

7 Replies

  • shakedog
    shakedog

    Posted

    I neglected to mention she's also plagued with headaches.
  • laurie_14419
    laurie_14419 shakedog

    Posted

    Does she have problems with her coordination, gait, pain, ears (vestibular), sinuses, or tremors or spacticity?
    • shakedog
      shakedog laurie_14419

      Posted

      She does have challenges regarding her coordination & balance, extremely low energy level, very low body weight (5'-3", 87 lbs--up from low of 72 lbs), dental (new set of dental partials made), daily facial pain (primarily on the right side), partial seizures (confirmed via EEG, Sept 2014), clarity of thinking, ringing in the ears (had hearing tested & new hearing aids-not being worn)....  Her doctor is attempting to deal with 1) intense facial pain 2) obsessive compulsive condition regarding scratching of some mosquito bites that never allow the areas to heal and 3) lack of appetite due to depression...etc.  She is taking a variety of medications, most of which have side effects of fuzzy thinking, possible nausea, dizziness...etc. all of which add to the complexity of her case.
    • laurie_14419
      laurie_14419 shakedog

      Posted

      Tell me more about thr "mosquito" bites? Does she...or anyone else in the family have rashes, rosacea, acne-like bumps...itchyness? How are the eyes? Watery, reddened, scratchy, crusty lashes? It may not be so much of an obsessive compulsion...but a very real condition...that most doctors don't know much about. Demodex seem to bombard those who are immune compromised...and it can be very stressful.
  • besteltri
    besteltri shakedog

    Posted

    Hello There, I actually had trigeminal neuralgia and had the surgery to fix the issue which worked to great success. My best way to describe the trigeminal neuralgia pain was a very painfull pressure in my face which always felt like I needed a root canal but could never pinpoint a tooth that was causing it. By the time it got worse and we ruled out the teeth, jaw and sinus ( which took years) they put me on Tegretal which stopped the pain after a day of building up in my system.  If you go to a Neuroligist and get a MRI they should be able to tell you if a blood vessel is effecting the trigeminal nerve in the face to rule it out.  I'm from Boston and can recommend a Nerologist out here if you ever one.

    Best of luck! and hope your Mom finds some peace in all this as it gets very frustrating to find and solve the issue.

    • shakedog
      shakedog besteltri

      Posted

      Thanks so much for your reply.  Her MRI showed no evidence of a blood vessel irritating the trigeminal nerve.  However, X-rays showed evidence of arthritis in the upper vertebrae of the neck at the base of the head.  Her doctor is currently focusing on pain relief but is still actively pursuing effective treatment of her facial pain but at this point we are still uncertain of the outcome.  As time passes with no cure in sight it becomes more and more depressing.  

      At some point we may seriously consider traveling to the mainland (Stanford Medical Center or Mayo Clinic) to pursue an actual cure for her condition.  

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