Newly diagonosed with FND - still trying to get my head around all of it and information. After not having a true diagnoses for 2 yrs I'm a bit relieved. I have been to doctors and hospital ER so many times...just to be told nothing is wrong and I'm wasting their resources. There is something physically wrong when you can't walk, talk and go on about normal life. I was asked by one doctor why couldn't I go to work, why are you out of work - for one how would I get there in this condition, no function of lower legs and who would want me to answer phones with slurred stuttering speech. Not to mention the fatigue that takes over. If I hear about stress one more time...this is stressful not having control and not knowing what the heck is happening to you thinking the worst at times.
My episodes are getting worse each time now and getting closer in time. Last year I was out of work for 4 month and then could only work part-time. I'm out of work again since the beginning on 2013 - I fear I will not be able to return due to symptoms and episodes.
From what I'm reading I'm sure most are experiencing alot of the same and the frustration that goes along with it. I'm doing my best to pick myself up again and work with PT and other suggestions to get better. I love to be active, miss getting out, walking and doing everyday things. My family has been very supportive but very confused as to what is happening as well.
Believe, Be positive! Hope there are some answers.
Written by
kimba
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Yes i agree it is hard to get your head around the diagnoses but i waited nearly 14 years for mine with people telling me it was in my head and the nasty Drs and Specialists i have met in this time is unbelievable, Like you i was asked why i could not work and i got my contract terminated due to ill health. I have many problems like walking and more recently the onset of dystonia, the involuntary movements limit co-ordination, It sound like you have a good family and that does help a lot, If you would like to chat again im here As you say think positive
I think all doctors should be required to take classes on how to be compassionate to patients but most of all how to commmunicate with patients. I went to a neurologists for 9 yearss. He put me on 3 medications for Parkinsons Disease. Then I found out from another doctor that my neurologists thought I had a conversion disorder. When I asked the doctor why my neurologist didn't tell me he answered......"most doctors don't tell their patients they have a conversion disorder becoz they don't want to upset them" Are you freaking kidding me!!
I am quite surprised how often this happens. They don't know anymore about functional/conversion symptoms that what we know yet they are the experts. I am curious though if you saw results with the parkinson meds? I have been on Parkinson meds and I had great results. I still have to think he questioned the conversion diagnosis because doctors are very hesitant with some drugs. Anti-depressents they have sitting out like mints in a candy dish. Ironically my worse side effects came with those type of drugs vs the parkinson meds.
My husband has also recently been diagnosed with FND , we were quite lucky to get a diagnoses after 10 days after a number of tests and meeting with a Neurologist. It is a cruel disorder and very difficult to live with for the sufferer as well as their family, my husband is waiting on speech and language therapy as well as pysiotherapy . I find the unresponsive episodes the hardest to deal with.
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Newly Diagnosed
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