FMD, What really is going on??

Good Morning All, Many of you know me, some are new and may not. Anyone can read previous posts of mine so that I don't have to be to redundant in this post. Although a little history will be helpful.

I was diagnosed with possible fnd or dystonia back in 1998 after a brain surgery for vestibular disease, and a spinal fluid leak. The symptoms began within months of this surgery.

One evening while sitting with my husband, having put the children to bed, I said my face felt funny, within minutes I was seizing and yet was totally aware of the whole nightmare my body was going through. Rushed to the hospital by ambulance, you all know the story, found nothing. Several days later a repeat, followed by the inability to speak hardly, unable to move properly, facial pulling. I looked like a stroke victim.

That began the journey, neuro's said it was psych, psych said it was neuro issue. After two years I was finally diagnosed with paroxysmal dystonia and spasmodic dysphonia of the vocal chords. I had been in a chair for these two years, seizing up to 12 hours a day, unable to talk most of the time, twisted and contorted.

Once diagnosed with dystonia I was started on meds and life began to be somewhat normal again but with great limitations.

Fast forward to 6 months ago, I lost the ability to eat almost anything, dropped over 30 lbs. and again was sent to Mayo. There I was diagnosed with an autonomic nervous system disorder which affects my heart, bladder, bowels, and digestion and thermal control.

I tell you all this because I believe there are a small number here who have a psychological factor for their conditions. I have what most of you have, or very similar symptoms. Although i was diagnosed with a movement disorder, which I have always stated is what this is an "Undiagnosed Movement Disorder" or a slow neurological unknown condition.

They do not know what caused the autonomic disease, but I know with everything in me it is related to my dystonia or fnd. Please keep searching, do not give up hope, they will get this right, it is in your head, but then all physical and psychological and neurological issues are in the head right? Hope this gives strength to some and answers to others. There is voice in numbers, and faith in God to help us through this thing, it does not define us, it is a part of us. God Bless to You All. Cathy

5 Replies

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  • Cathy that's such a good way of describing things we share and some that we don't. I am learning as much as i can to help me understand what happens. I now have got to a point where I can have one hour in the morning where I feel " normal" before I'm exhausted etc. This shows me that my brain/ body are able to work together and it gives me hope. I have been housebound for about a year and it is lonely and I miss people. My husband is my carer which means he also is home a lot. It's not easy but I'm not giving up-I'm too independent ( in my head) to do that! God bless, Debbie xx

  • Thanks Debbie, I know what it is like to miss going out and seeing people, I am very social. My husband too is my care giver, when I feel good I run like the wind, and on days when God sits me down for anytime, I do what I can to make the most of this life. Stay strong and optimistic, after having not eaten for 5 months, I take every bite and every breath in a new light, every day has its highs and lows. Sometimes we just have to look a little more for the highs, but there always there. God Bless, Cathy

  • Hi Cathy,

    Sorry you've been through such a rough time - glad you are improving and able to eat again.

    One thing that stood out for me - the symptoms you describe can also be attributable to spinal damage. I have had similar symptoms, been sent for neck/Cspine scan - awaiting results. They have checked this out for you, yes ? Angela x

  • Hi Angela, thanks for your reply. They have never examined my neck or spine, however they believe the autonomic neuropathy originates from the brain stem and spine. I guess after being so very very ill for this past 5-6 months, I am just enjoying being able to do simple things again. I know this too is a season, just so blessed God has given me this season as we all prepare to celebrate the greatest gift of all time. Cathy

  • Thank you for sharing Cathy. I really hope you are doing better now.

    It's so difficult to understand everything that is/has happened to us all. I've not given up hope buy I've given up analysing now and just focusing on staying positive and looking forwards. I try to focus on the highs each day brings too and enjoy them. Praise God for them and I pray they continue to increase x

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