FMD, What really is going on??

[cathys20]

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

[mamadeb]

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

[cathys20 in reply to mamadeb]

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

[angelite]

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

[cathys20 in reply to angelite]

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

[kjkla85]

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

[Seaotter2020 Volunteer FND Hope]

Perhaps we are twin sisters separated at birth? I had brain surgery. PItuitary gland shut off. Have autonomic issues now although better since I am on cortisol, but not erased. Have one hand that has been swelling to the size of a baseball glove - seen 13 doctors for it. No answers one more test on Monday. Another MRI on neck and shoulder. Now I have left throats paralysis and I am having a hard time swallowing food.

Please if you can sign up for the Scientific Registry, we needed to be researched. 3 months after brain tumor removal they sent me to psychiatry looking for hidden trauma. I had been left with epilepsy after the surgery and had also non epileptic seizures. ( that NEVER existed. ) almost 2 years later I had an adrenal crisis and failure . The root of my seizures. My brain could never heal after the surgery because it got overwhelmed with any type of stimulation. Too much noise, light, move,ent etc... finally finished speech therapy for brain cognition and memory and swallows help. I count myself among the lucky. Over on the Facebook pages I also read the horrors of years of no diagnosis and then get a diagnosis of MS and they are relieved because they can finally get treatment. Clearly something is wrong in the medical world. We need to get our own research done.

With ❤️

[cathys20 in reply to Seaotter2020]

Good Morning, I would love to sign up for the any kind of research. If you send link I will definitely do it. I have a belief that we are some how predisposed with the condition. Then something sets it in motion. I think this way because it seems that there is always something that happens to each of our bodies within months of it starting. Be it a brain injury, surgery, infection, any kind of trauma.

I had my vascular study done on Friday. I had zero pulses and pressures in my toes. Techs said they had never seen this before. Did not know if it was nerve damage or vascular, but they said the Dr. would read it and get back to me this week. Just that there was definitely something wrong. (I already knew that ). Will wait to hear.

Are you in the states? If so wherabout? Would love to talk sometime. Can't talk on some days at all, but by God Grace I am able today.

I so wish I could get into the rheumatologist sooner than end of April. I have so much going on right now. I do believe in the end they will figure this thing out, if only more were really looking into it and bringing attention to it. But I think of dystonia, which I have, so many years ago it was in the same field of fnd, and now so many advances and so much more awareness. It is just time, but for many of us it will be too late, but prayerfully for the children growing up with this. God Bless you and all on this board today. Today is my favorite day, it is all given to the God who created us. Have a great one, Cathy