Insurance not helping for treatment of FMD/FND

I would love to know if anyone in the U.S is having problems getting their insurance to approve treatment for Functional Movement or Neurological Disorder. My insurance United Health Care is making it very difficult to obtain help in treating this disorder. They won't approve nor deny coverage, that way I can't appeal anything. Anyone have issues like this, and what have you done to get treatment for this. So frustrated, and would love advise on how to get this done. Thanks!

13 Replies

  • I had United Health Care back in 1998 when all this began, I live in WI. This was my problem, when I went to a neuro in the beginning, they said I needed a psychologist, so they would not pay. Then I would go to the psychologist, they would say it was neurological, and my insurance would not pay. This last for two full years till I was finally diagnosed with dystonia. It was a disaster. Since that time I have not had any problems with my care being paid. I no longer am with United Health Care, went on Medicare two years ago. I had to fight a lot of battles back then for payment, will pray all goes well with you. Its so hard when we have to be concerned with this aspect too, when we are already struggling. Have a Great day, God Bless, Cathy

  • I have bounced from place to place as well, Not fun is it? I finally found a doctor who specializes in movement disorders, but is not able to treat me for it. However he has put me in for studies at the National Institute of health to see if they can learn from me to help the issue of doctors not knowing anything about FND/ FMD.. He has also hooked me up with a group at Frazier Institute in KY, and there is the Mayo Clinic in MN I think.. and they have treatment programs, but again getting insurance to pull their head out and help is the fun part. Wish you all the best as well. One of these days FND/FMD will be known by doctors more, and we will be able to get the help we need. Cheryl

  • I agree completely, but don't think I will see it in my lifetime. Glad you might be getting the help you need. I will pray for you. Meds have really helped me along with lifestyle change. Brighter days are coming, along with some cloudy ones, but praise the Lord, the bright ones out weight the bad. God Bless, Cathy

  • What meds have you found that are helping you out? I have a few things that make me sleepy, and help slightly, but don't really do much for me.

  • Originally I was started on Tegretol, an anti-seizure drug. It was like the lights went on. I had been in a chair for almost two years with constant dystonic attacks, unable to speak most of the time, really almost totally dysfuntioning. Within days of the start of this drug I was up and walking, feeling almost normal on days. I was on Tegretol and Tomopax for years, both anti-seizure drugs. Several years back they changed these two meds out for primidone and sinemet, primidone is an anti-seizure drug and sinemet is used for parkinsons patients. I was having much difficulty walking. Also I have taken baclofen since the beginning. This too is to help me walk and with the pain in my legs. If you could have seen me before the medications to how I am now, you would not have believed it possible. Like I said I still have breakthrough symptoms, sometimes extremely bad, but I live an almost normal life most of the time. Today I cannot talk but a whisper, I have been diagnosed with spasmodic dysphonia, voice dystonia, and am having quite a bit of difficulty walking, but no pain. It is a good day. There is hope, the hardest part is getting a Dr. to hear and be open. After the two years I found a wonderful Dr. who was willing to try different things, I believe he was a God send for me. I was so ill my husband was praying that God would take me. We have been married 41 years, he is such a great support. God Hears our prayers, It is in His perfect timing though not ours. Will so pray for good Dr.s for you. Cathy

  • Thank you so much for the information, I have been trying baclofen, it helps to dull the issues a little, but doesn't take it all away. I started out with a cold 6 1/2 years ago, with a cold that took my voice, first thought it could be spasmodic Dysphonia, but then when trying Botox, it made it worse. Eventually found I had muscle tension Dysphonia.. So I went to a speech therapist for several years. Then one day trying a med, to see if it could help relax the muscles, I started to have physical issues with my hands, arms, and neck, tremors, jerking etc.. it has since then traveled throughout the rest of my body, and puts me into non epileptic seizures, or the muscles in my body out of the blue go into a dry heaves like movement but it doesn't come and go, it takes all the muscles and contracts them all at once and just squeezes, can't breathe during these, until the muscle releases. It does the same thing in my legs, until I drop to the floor because it pulls me down. My voice still comes and goes hoarse like here and there, but mostly becomes very slurred or I can't get the words out.. and so many other things. It is crazy how it has changed throughout the years. It has taken me away from work because I can't be on the phones and I am a workman comp issue if I walk in.. so now on disability, and actually fighting for long term disability along with the insurance. Not a fun thing that is for sure. I am just grateful for my family, and great neighbors. And you are right, this is all in his time, not ours. I am just glad that it is not worse, and I pray that someday there will be an answer.

  • WE sound so very similar. You call them non-epileptic seizures, I call them dystonic storms. Read up on dystonic storms. I was started on pronanolol last year for the tremors, it also helps with my high blood pressure, cannot tell you the world of difference it has made. My hands would just tremor uncontollably and the internal tremors were so bad, this has taken it almost all away. I don't like all the drugs I take, but the flip side, in bedridden, so it is the best trade off for me. Will talk soon. Cathy I have been liske this since 1998 after my brain surgery and spinal fluid leak. Such a disaster, but you can't look back, only forward. God Bless, Cathy

  • Kaiser Permanente is the same way ! Denial is the easiest way out for Dr's who are compelled and say you caused this.

  • My Dr. are the ones fighting for me to get help. Its the stupid insurance that are being the butt heads. They won't approve or deny my coverage, they just say it is up to me, if I go and try to get help, but it is a do at your own risk, meaning they may pay for some, but they may not pay for all. Not fun when I have to travel from Utah to Kentucky to try and get treatment, so I not only have the flight, but then I could be charged the whole week in a hospital. Gotta love them. NOT!!

  • FND would be the same diagnostic code used for Conversion Disorder. This diagnostic code does fall under mental health, so they shouldn't be able to get away with denying you treatment if your policy includes coverage for mental health. However, they can dictate the type of treatment and care they will pay for. Now, if you have been coded as something like Somatic Symptoms Disorder then it maybe isn't covered. You may need to ask your doctor what coding they are using. It will be either a DSM or ICD coding. Once you know the coding number then you could contact your insurance and ask for the time frame in which they must respond with either approval or denial.

  • Thank you, that is very helpful, I will check to see what their coding is. I am just trying to get into a treatment plan, you would think that they would want you to get better rather than keep paying for all the Dr. appt. Go Figure huh? I appreciate the information. Have a great day!

  • I too live in WI and have United Health Care. They are the worst. They use every excuse there is...facility is in network, but doctor isn't, the wrong referral was submitted or the best one, "it is not medically necessary". But feel free to file an appeal; with us. It's a joke.

  • I agree with you completely. The fun part with mine is.. they won't deny me, so they don't have to give me an explanation of why they won't cover, and I can't appeal anything because there was no denial. They just say go at your own risk, and maybe we will cover you, maybe we won't. So frustrating.

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