Please help me find treatment in NYC ... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Please help me find treatment in NYC area.

TadeoNYC
TadeoNYC

It seems insane, but I've only been referred to two psychiatrists in the NYC area. Dr.Daniel Williams is self-pay, and Dr. Mark Groves is on medical leave for another month and I can't even speak to anyone at his office.

I have been having severe episodes of jaw tremors that began after a crippling anxiety attack 15 months ago. I finally was diagnosed with psychogenic movement disorder at Columbia University Hospital this month. I've been taking valium to help stop them, but that is another problem now. Beth Israel ER wanted nothing to do with me today, and referred me to detox.

My current psychiatrist and social worker are clueless, and I need to change to a new treatment team. I've seen mention of inpatient type programs, and would strongly consider that even if it required travel.

The jaw tremors are really debilitating. I can brace the muscles and stop them, but it makes me anxious, makes me irritable, causes headaches. Most often recently, I first notice that I'm clenching my jaw. A paradox, an unconscious response to an unconscious response.

6 Replies

Good Morning, First let me say I am so very sorry you have been treated so poorly by the medical profession. It seems to be the rule of thumb, unfortunately, with this disorder.

The second thing is Do you think this is a psychiatric issue? Only you can know the answer to that question, not the Dr.s. Was there any illness or accident or medication change before this all began? Keep in mind just because they say it is psychiatric does not, and is usually not the case. Most cases of both fnd and movement disorders are misdiagnosed for years if not forever.

Please read some of my other posts and posts of others on here. There is help available, especially in people who have the same sort of things going on. We are all here for each other.

One more question? They said they wanted you to go into a detox program, do you have a drug or alcohol problem that could be contributing to your current problems. I know that is a very personal question and don't feel like you have to answer, but those type of things could be a factor in all of this.

In any event, please keep reaching out on here, we are all here for each other. God Bless and I pray this day is a better day for you. Cathy :-)

TadeoNYC
TadeoNYC in reply to cathys20

The onset of tremors began during a time where I was in incredible pain from TMD, and was dealing with stress from my son's teachers implying he was on the Spectrum. The very first episode occurred in the ER after a severe anxiety attack that was followed by a crippling headache. I was given dilaudid for the headache, and add the headache subsided the jaw tremors began. I was given IV valium, and lots of it, and that stopped the tremors. They occurred again a couple weeks later at night when I tried relaxing on the couch , and I had to go back to the ER. They gave me valium again.

So the attitude from the neurologist I settled upon was, that he believed they were caused by inflamed nerves from my TMD and orthodontics, and to take valium to stop them. In the fall they were getting strong and regular, so I requested botox and he agreed it would probably help. I also had had my braces removed, still had TMD, and wound up buying an orthodontic splint(which helped relieve headaches, but not tremors).

This all has caused my marriage to fall apart. The physical and emotional stress of separating last month caused constant tremors, and so I was taking a lot of valium. Now life has settled a bit, tremors are less frequent and not as strong, and I wound up going in to a bit of valium withdrawal. My psychiatrist is unwilling/unable to manage my valium dependency, and told me to talk to my neurologist about it. I haven't bothered, because it is certainly not his area of expertise.

I am meeting on Tuesday with Dr. Paul Green at Mt. Sinai hospital, he supposedly treats psychogenic movement disorder. I'm hoping he can refer me to treatment that accepts BC/BS.

Am I certain that it is truly psychogenic tremor? No, but the onset after an anxiety attack, it's distractability response, that it had spread to my left foot twice, and some other factors point in that direction.

I would love to get additional professional opinions. One major problem, has been that for several appointments I was not having any symptoms during the visit. This concerns me for Tuesday as well.

So sorry to hear how difficult life is for you now. I read on a post abut a hospital, Southmead Hospital in Bristol, England that is providing treatments. I will try to find out more information for you. I have a functional movement disorder too. It is awful and progressive. I live in Virginia. Here is my e-mail address if you want to contact me: johannaelik@gmail.com

Sending positive thoughts and prayers to you.

Johanna

Tadeonyc, I am so sorry you are having these problems. The best I can provide you and the closest I know are NIH in Bethesda MD. Or Frazier rehab institute in Kentucky. You would have to be referred to both. Worth checking on though. Best of luck. Keep us posted.

Cheryl

I actually just finished emailing the NIH. I'll have to see what sort of response I get. I do have family in the D.C., Virginia, Baltimore area. So going there isn't a stretch. I'm not sure about how going to Kentucky would work out.

So for now I'll be waiting for the doctor's referral on Tuesday, and wait and see about NIH. At least going in for this second opinion I'm much better educated about what I'm dealing with.

You might like to try these people who members have visited and recommend as being FND Aware.

New York

Dr. Lorna Myers, New York, NY USA

nonepilepticseizures.com/

youtube.com/watch?v=xYuDv-Q...

Dr. Pietro MazzoniColumbia Presbyterian NYC(recommended by Alison Hayes, April 26, 2015)

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