Discussions By Condition: Medical Errors

What to do next....

Posted In: Medical Errors 2 Replies
  • Posted By: Anonymous
  • January 16, 2007
  • 06:38 PM

Well it has been about 15 months since doctors gave me a diagnosis of ALS (in my 20's). I then went to many specialists and neurologists, some verifying diagnosis, others saying no...after many EMG's, they think they may have made a mistake but are not sure what my problem is...but here is the kicker....

I continue to have swallowing difficulties (using mostly supplementing foods because i cannot swallow whole food)
I continue to have quivering in my arms and legs throughout each and every day and night...
I have become so weak that I am not able to walk much anymore, I now have a motorized chair....
I can barely lift my arms up anymore to even put a cup to my mouth...

insurance has refused all physical therapy, speech therapy or any other supportive care...so where do i go from here?? I am just going month to month and they are saying take a Wait and See attitude...not sure what i am waiting for now???? Anyone else going through this type of undiagnosed, misdiagnosed problem???

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2 Replies:

  • Sorry for what you're going through. Perhaps you have an unusual presentation where the doctor's can't confirm a diagnosis? Did your doctors recommend physiotherapy/speech therapy? If they feel it's necessary can your insurance say no? I don't get that - isn't insurance there for when people need it? What did the insurance office actually say - they don't think you need it? Obviously if you are having trouble with swallowing and muscle strength it would be beneficial. Ask your doctor for help in getting those servcies. Surely something can be done! Best of luck to you - you are going through a lot!
    Anonymous 42789 Replies
    • January 17, 2007
    • 01:51 AM
    • 0
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  • Insurance company says they are in the business of improvement...with decline and physical therapy and speech therapy not making a difference or showing improvement with evaluations, they no longer are obligated to provide services due to decline. So no help there.....in fact have not been left with much follow up....just the wait and see attitude, but as i said in the meantime i continue on supplemental food (boost, ice cream, soups, applesauce, etc) in order to keep my weight stable....not sure which way to go next...
    Anonymous 42789 Replies
    • January 17, 2007
    • 04:05 AM
    • 0
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