New to this board

[cathys20]

Hi my name is Cathy, and I found fnd by chance just a few days ago. I have been emersed in the information available about it since then.

For the past 15 years I have suffered from dystonic type symtoms over my entire body. Muscle weakness to the point of not being able to move for hours on end any part of my body. Basically being locked in my body with my mind working.

It all started 15 years ago after I had a vestibular neurectomy on my left side. My balance nerve was sectioned in brain surgery. They did this because I had constant vertigo for almost a year and a constant nystagmus in my eyes that affected my vision. I was told other than gentamicin treatment, which sounded like a nightmare, this was my best option. After the surgery I developed a spinal fluid leak that almost killed me, and was placed on a lumbar drain, followed by a second surgery.

Within one month of this operation the dystonic symptoms came. They thought I was having a stroke, I was not. I went to U of M in minnesota and after a week in the hospital said it was not dystonia but a conversion disorder. Ok I thought, go to a psychiatrist and he will figure it out. Only to be told by 3 psychaitrists and countless testing I did not have a conversion disorder, I needed a good neurologist.

I was blessed to find a internist who believed there was something wrong with my brain and started me on Tegretol. So after 2 years in a chair, unable to talk, dsytonic all over, I had my life back again. During the past 15 years I have had times when I became episotic and the medication was increased. About 4 years ago when my potassium bottomed out they started me on sinemet, a neurologist from NY saw me and said I definitely had dystonia. The sinemet worked well, and recently after being sick for three months again the sinemet was increased and again the lights are on, and I am functional again.

My last visit with the neuro stated I could possibly have a conversion disorder again. I felt defeated, back and forth and back and forth. I was so exhausted by it all. Then 2-3 days ago I found this site fnd.hope and I said this is me. I do not have a conversion disorder just like the psychiatrists keep saying, my brain is just not connection right. I have made an appointment to go the the Carrick Brain Center in TX next month. I would like to know if anyone has been there and if it helped if they have. It is very costly, 1000-1200 a day. Minimum 8 day stay. We will have to second mortgage the house. But I need help and answers. Would appreciate any and all help from anyone. Also you can email me privately at [e-mail]. Thanks in advance for any help. Also I have been diagnosed with spasmodic dysphonic, high blood pressure, hypokylemia, and paroxysmal dystonia. But I really think my brain is just messed up. God Bless, and pray this finds you well and hopeful. I apologize for the long post, it is a long history. Will try to keep them shorter after this.

[EnglishIslander FND Hope Volunteer]

Hi Cathy. Sounds like you are living nightmare after nightmare. The first thing to know is YOU ARE NOT ALONE!

There are many of us dealing with the strangeness that is FND (or at least, under that umbrella term). It should be remembered that FND often coexists with other major health issues. Our minds can become overwhelmed by all that is happening to our bodies and "crash". The difficulty then becomes sorting one from the other and treating appropriately. I'd suggest you come ad join our Facebook group, link accessible via the homepage of fndhope.org

There are many members in the USA so i'm sure others may well be able to help with specifics you are enquiring about. It is a closed group so only those there can see your posts. An admin will contact you if you decide to join. Best wishes, Duncan Peacock

[cathys20 in reply to EnglishIslander]

Thank you Duncan for taking the time to reply. I am not very facebook savvy and am afraid to post there, although I did join the group. I am having my best day so far today in 3 months. Feels so good. No voice, hard to walk, but I feel like me. Sometimes I think I'll forget what me feels like. So blessed to have this day. God Bless, CAthy

[EnglishIslander FND Hope Volunteer in reply to cathys20]

I wasn't either Cathy, but the group has been set up as a "closed" one so only those who are members can see your posts and nothing appears on your timeline, thus you can talk to like minded people without worrying whether friends/relatives will see.

if you prefer you can always message me or email [e-mail]

I too have speech issues, the words are in my head but the brain cannot send the right signals to the 41 speech muscles to get them out!

Hope the rest of your day goes well. I'm whiling away the hours sat in hospital awaiting OT to let me out