Hi! there is a great community of people on the Australian site of FND Hope, it really depends on where you are. The moderators have put together a list of professionals who specialise in the diagnosis and treatment of FND. However, that said I also have seen so many different doctors and trying to get in to see people is like pushing a boulder uphill. If you are international or in the U.S try to find a good physiotherapist (or occupational therapist) part of this condition is to find a way to "fix the pathway that got broken" (i.e to retrain yourself to walk). I don't know where you are but what I do know if that the US is even behind in terms of treatment care of patients.
There are three main areas of getting help
1. Old fashioned psychiatry (however with someone who knows that the DSM-5 has been updated, so before making an appointment check to find out if the practitioner knows this and also knows that there is an actual diagnosis test for FND)
2, General Doctor who is able to prescribe some kind of drug like diazapem ) again not all things work the same for everyone this drug allows me to function to be able to type this response etc etc
3. Physio who has knowledge and has worked with movement disorders
There is no quick fix and no one method. Everyone gets different symptoms, also sometimes like in my case the symptoms change. neurosymptoms.com also has info.
Most of the time, this disorder is terribly isolating. I lost my job, my life and so many other things due to this condition. I am now in financial ruin due to the medical costs. AND I STILL do not have a clean view of recovery. i.e I still need to find a physio to help me with movement disorders etc. This disorder is horribly isolating. So join FND Hope where ever you are.
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I don't know how many times over the past 6 plus years, when there has been even a slight improvement, I have thought....this is gone! This a test of grace under fire!
Thank you so much for your reply! While living n Montana I received Neuro-Vascualr Therapy. It was somewhat helpful. I will follow your suggestions and see what I can find.
Agree, this disorder is very isolating. Very difficult to give information, even to friends who are supportive and want to help. Find it exhausting as so many just do not understand since they have never heard of this..or can comprehend how it has taken me so long to get a diagnosis.
My symptoms have progressed, and changed from when this first started too. I had a very full and satisfying life before this started, A volunteer at two medical centers as a Reiki Master practitioner, artist, writer, socially active, dating, dancing, going to concerts traveling, and many other interests. Now I am having difficulties with daily living; laundromat, shopping, groceries, any social activity exhausts me due to the sensory overload. I cannot create my art due to weakness, right sided pain and muscle spasms.
This site and connecting with others does give me some hope. ..and a direction to go forward in locating the treatments that may can be of benefit to me.
Johanna, have you used Reiki on this disorder? I used to do a lot of Reiki on myself around the time I had cancer, which eventually triggered a big relapse after 6 years of no symptoms. (I was Reiki 2 and also had an Angelic Reiki attunement - both of which i have since removed for other personal reasons.)
I was also using another technique that disconnects or 'submarines' your negative conscious thoughts, thinking that this was a good way of coping with all the serious problems happening all around me at the time. Disconnecting and submarine those thoughts is exactly one of the causes of this disorder - similar to being told to grow up, stop being a woose, stop being a baby, stop crying, suck it up, be a man, etc - they are one of the many known psychological causes of Conversion Disorder, though they aren't talked about as much these days because it's not a cause for at least 1/3 of people with FND).
Anyway, I eventually blamed the return of symptoms on this other technique, but wondered why Reiki didn't seem to help, when I thought that it should have.
I notice that my energy system suddenly jumping into strong reversal pattern is strongly linked to the sudden onset of symptoms. I'm not entirely sure which way it goes, but I think the reversal triggers the symptoms.
Have you used other energy therapy techniques? I have found Donna Eden's book to be very helpful, especially 'Cook's Hookup', which is great for reversing the chai/qi energy back to positive being up and negative being down. I had strongly reversed energy for so long.
I also use EFT (Emotional Freedom Technique) on my seizures. I 'Touch and Breathe' (TAB) on each of the tapping points from EFT, and I can feel it forcing the energy to realign back to it's normal pattern in each of the Meridians that the tapping points are located on.
Initially touching a point increases the energy release of the seizure, but after a few minutes of holding the point firmly and breathing deeply, the energy settles back down to normal, so I move to the next point. It can take 10-15 minutes for the seizure to melt away, instead of it lasting up to 5 or more hours.
Not all of my symptoms are from energy reversal from negative thoughts because some are triggered by other physical things (like changes in air pressure or temperature, or sitting too long). EFT still helps these other symptoms but they will often come back until the weather (for example) settles down.
I haven't come across anyone who has mentioned Reiki before, so I'm intrigued about your experiences with using it and your symptoms.
what is neuro vascular therapy- someone I could contact ? might be good to get information on this out to everyone. I never heard of it . But I know that many of us have some kind of vascular - brain relationship issues...
I would strongly recommend the FNDHope Facebook groups. I'm in several, including the Aussie/NZ group and the sense of community is really great. So many people join the groups feeling so isolated, then discover others living in the same suburbs or the same state/county, and they also discover others with the same set of symptoms.
So many people talk about how relieved they are to find others to talk to who really understand, especially during their darkest hours when they can't sleep, or they've had to miss yet another social/family event, or they've been misunderstood or mistreated by medical people, or their symptoms have taken a nose dive.
So, even if you haven't yet joined Facebook, it's worth it just to find a friend who really gets your problems, who can be your best friend, who can help you when you need it most.
Thank you all for you replies. I have now joined the FNDHope Facebook group. I am in the US and the knowledge here is next to nil. I am blessed to have, by grace, to have a neurologist at a major teaching hospital who knows and understand FND. Seems even most of my closest friends, do not understand and advise, exercise, push through it, the docs can't figure it out..huh, you seemed better yesterday, now your worse again???? All of this just feeds into what I have experienced with the medical community until this new neurologist. I find it exhausting to repeatedly say to friends, the reasons why I can't just push thought it or exercise or all of the rest. I try now to thank them for their suggestions and change the subject. The challenges of this disorder and all that has been lost can be overwhelming...too much of the time!
I live in the US. I have found it a hard road for sure. But am blessed in the fact that I have had great medical care since the first two years, which were a nightmare. I have a great understanding neuro, and primary. I am diagnosed with a neurologic movement disorder, which I firmly believe it what we all have. Our transmissions go haywire at any time or all the time. I have been also very blessed with a NY movement specialist who comes into my home town once a month, she has given me very effective drugs and great insight in dealing with this. I pray you all find good health care and support. In Christ, Cathy
Good to read your post and hear what you are doing for yourself.
I agree, movement disorders. I live in Virginia and will try to find a movement specialist for treatments. I am also thinking about some type of neural re-programming, adrenal support supplement and some other supplements.
No phsio therapy for movement disorders where near where i live, in Virginia. What is the test for FND? Is it the Functional MRI? Any other tests to make this diagnosis? My neurologist made my diagnosis based on history symptoms and, I believe the elimination of a psychological component makes it clearly a neurological disorder.
I ma so sorry to hear how much you have lost due to this illness. Is there any help available for medical bills? I have applied for financial assistance programs at he hospital. Do you have a social services case worker who can help you with resources?
I hear you about the isolation. My life has narrowed down to basically doing very little. I am now having severe headaches and some mental confusion. No treatments and still more progression. It is absolutely overwhelming at times.
There are no PT's who do physio therapy near where I live in Virginia. I now have Home Health Care; includes an OT, who does not know about physio, social worker, speech therapist, visiting nurse and will have an aide to help me soon.
What is the test to diagnose FND? Is it the Functional MRI?
Yes, this disorder is terribly isolating. I am sorry that you have lost so much. Can you apply for some help with medical bills? Do you have a social worker or case manager to help you to find resources? I am inundated with medical bills and am paying on all each month, but more come.
Seems there aren't any treatments that will give improvement, at least not here in the US. I am having more progression with headache and mental confusion...as my brain is crashing more and more.
I will send positive thoughts for you to get the help you need..
You asked about Neuro-Vascular therapy. I received that while living in Montana. It is an alternative therapy to balance the sympathetic and para-sympathetic nervous systems. The therapist gently touches the bony areas of the body, starting with the feet and gradually goes up the body. She even inserted her fingers into my mouth as the mouth is so close to the cranium. It reduced pain and relaxed the body, helping a bit with the muscle spasticity and tightness. Can't find anyone in Virginia who does this therapy. I was surprised that is is being done out west, as the docs there don't know anything about FND. They, the neurologist, think it is psychological.
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