29-04-2020 04:05 PM
29-04-2020 04:05 PM
This is my first post. I don't usually do these things but I'm at a loss for what else to do.
My daughter in-law has had 3 confirmed diagnoses from 3 different neurologists of Functional Neurological Disorder - to get to this point has been more than 18 months - living with regular seizures, eye problems, balance, falls risk, speech problems, the list goes on. But the poor thing is going around in circles....
- GP can't help
- The Neurologist sent her for ECG and EEG tests, now says will not work with her any more (don't know why)
She's asking what else she can do, I don't know what to do to help her. Can anyone point me in the right direct for support from here? The neurologist told her if she has any hope of reversing the symptoms, it needs to start happening soon, but we're in the middle of a pandemic lockdown and time is ticking.
Can anyone help?
29-04-2020 05:12 PM
29-04-2020 05:12 PM
Hi, I am new to this forum, I just joined mainly because AI saw your post regarding FND diagnosis. My 21 yo daughter was diagnosed with FND when she was 14 so we have been living with this for quite a few years now. She has had good experiences and bad. I am admin on a FB page for carers of FND sufferers thats Australian based. have a look at https://fndaus.org.au/ And you might find helpful info there. Its hard when Neurologists saysee a Psychologist or Psychiatrist. Then the Psych's say see a neuro. You did well getting as far as you did.
My daughter had seizures, walking issues, paralysis, pain, and many other issues. She is doing pretty well now as far as the FND goes. She only has Lower leg pain which is controlled by meds. She had to relearn how to walk after the paralysis, and used a wheelchair for over a year. I hope I have been able to help you a bit
29-04-2020 05:50 PM
29-04-2020 05:50 PM
Hi, and thanks so much for the post. Finding a GP that understands has been difficult. Do you have any suggestions about good places or medical professionals to connect with?
30-04-2020 09:26 AM
30-04-2020 09:26 AM
It depends what state you're in To which specialist is good. Qld people are lucky to Have Dr Alex Lehn and theres a few specialists who have had training under him. There are some useful tips in the website i suggested. May be easier to look there. can search by state
I hope this can help
30-04-2020 03:47 PM
30-04-2020 03:47 PM
Hi,
There's a great book coming out in a couple of months covering assessment and treatment of FND and functional somatic symptoms in children and adolescents. The main author works out of Westmead Hospital in Sydney. There's also this story from the ABC with contributions from doctors specialising in FND.
Hope this helps.
Crankenstein
30-04-2020 04:47 PM
30-04-2020 04:47 PM
30-04-2020 06:19 PM
30-04-2020 06:19 PM
Check out eCPR that's happening around Australia but unfortunately it's on hold in person. Better than drugs but takes training
02-05-2020 06:26 AM
02-05-2020 06:26 AM
Hi its my first took time to set up.but now i thimk im on my way.
The worst part of yoi post was that you couldnt say whay y needed to say on the spot.
Ask the Neurologist why he cant, will not, choosrs not to work with this person, probably out of his territory but yous need a base dovtor,professional. The Gp can do referals but the Neurologist would know who to send to for the best treatment, And the specialist is the pne to het things moving along. Make a list of whst you need to do, people to see ,take it to gp bit when you ask neuro why he wont work with her ask him who will ..
Im thinking shes on disability so can a disability advocat help you. You havnt given much info that i can work with . Say to both medical professionals that you dont know what to do and id they van get her inyo get help asap. Ask for a social worker, ruha.. disability advocat. I dont know where you live so im stuch too now, sorry .
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