Swing and a Miss

[Gud4Ewe]

I have FND. I have had it since I was a baby, or at least as far back as my mind can take me. I don't recall ever not having this condition now that I know what it is I should have been looking for to identify it. That said, I am getting worse. Much worse. Last March I was told my degenerating condition was FND, but that is only because I didn't know to tell them I had FND. It was the first anyone had ever told me about it. It took me 10 months to realize that the part of this that is my FND is my normal self, irritated. With hypnotherapy I am able to calm the issues that are my FND in action. What I find is it is leaving behind a clearly visible and puzzling condition. My issue now is past the FND. It simply aggravates my FND but I am not in distress due to FND. Now... to explain that to all of these doctors...

If this was my FND, and I am able to calm these other things associated with my FND, why is this other part getting worse? I am now pressing the movement disorder clinic at Mercy to fit me in on an emergency request. On my bad days I am nearly immobile. Currently they have me as a patient of the University of Texas, but that is a nearly 6 hour 1-way drive for me, in my condition. My husband would have to take FMLA to take me there.

Last time I was there, they called out my FND and brushed me away in less than 1 hour. They never even called me to check up on me. It felt very cold, and I got the distinct impression he thought I may be slightly nuts and I should consider calming down. He told me to ignore the issues and they will stop.... don't give them any of my attention. Ok Doc, my big toe just cracked itself. My leg and arm muscles are rippling randomly like out of sync Christmas lights and the absolute aura of pain encompassing this sensation is indescribable. I have been able to keep working until 2 weeks ago, but the extra workload from the holiday pushed me past my limits. I simply can't sustain my physical state long enough to document that many cases, let alone manage their outcomes as well. I have to take a lot of breaks and I have to constantly reread and rewrite everything to keep it coherent. My words don't always come out on paper the way I said them in my head. I became overwhelmed just trying to get from day to day. I have been remote for over a year. Nobody has seen how bad this has gotten because I almost never leave my house. I am good at my job. If someone could please just slow this down, give me at least a few more years... We need my income.

News flash people... You CAN have FND AND another issue. Why the medical community as a whole finds that concept so hard to grasp is beyond me. I am suffering. I need to get on track and get back to my job before I have no job left to return to. Everyone has refused to fill out the FMLA paperwork to gain me time to meet with these doctors. I am out of work right now on a LOA, approved or not, and there is nothing I can do about it. Being upset will not change my inability to human. How many times do I have to hurt myself before this is important? Would they like to talk to my dentist about the 2 days of work she did to repair the cracks I put in my teeth from clenching my jaw in pain? I am trapped, and getting worse. I have no more interest in waits or negotiations. I don't care what anyone has to say. Something is wrong, they have missed it, and I need help, now.

General Doc - Was unable to convince my primary neurologist to see me under emergency, advised I request a second opinion from a 2nd Neurologist. Further stated she can't fill out my FMLA paperwork as this is a neurological condition and must be filled out by my neurologist.

2nd Opinion - 1st thoughts is that this is not any type of epilepsy but did an EEG to make sure - Further states he is not a movement specialist and he refers cases like mine to my current primary neurologist who has already said he can't help - 2nd neurologist also stated he in not the right neurologist to fill out the FMLA paperwork, and recommends taking it to my primary neurologist.

Current status - Pending results from EEG done 12/11, expected 1/7 due to the 2nd doctor's holiday vacation

Primary neurologist visit scheduled for January 14th - He has already stated to my GP that he can't help me and I need to see the movement specialist. Also, he can't fill out my FMLA paperwork because he isn't a movement specialist.

Movement specialist - Our clinic shares records with the University of Texas, and even though your request is to move your case to this local facility, you are still a new patient, and we don't have any openings for a new patient until next April.

Employment FMLA status - I have until 12/20 to return my completed paperwork or return to work. I am all out of vacation time.

I'm having a very hard time remaining calm.

[Tewa]

My heart is breaking for you. And I am so angry about how you are being dismissed passed on. This is horrible. Sending support and prayers.

[Bailey09]

I'm sorry for the way they have treated you it's disgusting I think they all need to been train again , I hope they resolve this for you soonerrather than later

Good luck xx

[pickleweed]

In which part of Texas are you in? I can ask for help for you from the FND Hope USA/Canada group that I belong to. When I was in Brownsville, TX, I was told that I would have to wait 5-6 months to see the neurologist as a new patient. It's easier to see a neurologist in some places compared to others. In what way are you degenerating? Are you having "seizure-like" attacks?

[AtMyWitsEnd53]

Reading your story is heart breaking and I feel so helpless because I am not in a position to help you. I empathize because I lost my insurance with my job behind similar circumstances. It is a sad state of affairs when we are not protected by our doctors who seem to forget that we are the reason they get paid and maintain a job. Try taking it to the hospital administrator or medical supervisor for the doctor you are seeing...maybe you will get some understanding and humanity shown you. I am praying that your situation turns around.

[Gud4Ewe]

I'm not in Texas. That's the issue. I'm right outside of Oklahoma city. I was sent to the University of Texas because we had no movement disorder specialists in the city still taking new patients. Texas was the only place I could go. it was that or Kansas City. Since that time, a new clinic has opened at Mercy less that 30 minutes from my house and that is where I am trying to be seen. They share records with the University, so my hope was, that would not make me a new patient, but a transferred case.

By degrading I mean I'm having what I can only describe as myoclonic jerks. Dozens to hundreds a day. They are very disruptive and while they are not normally painful in a single jerk, over several hours, the jerks cause my head to begin pounding and leaves me with cluster headaches. They make me forgetful because they ware me down. I've hit my head on things many times because of the jerks. I throw myself off balance, and from time to time you can hear places in me crack and snap from either the jerks or from the movements you can't see. My foot was completely at rest yesterday when I said my big toe cracked itself. I can't stop what's moving. Every morning when I wake up, my legs and feet wake up too. It is always the 1st thing I feel before I even open my eyes. The muscles twitch and pop and move constantly. Sometimes you can see it happening in the larger pops but most of the time its just a constant sensation of movement and humming. It creates a glow of pain that just sort of sits over my lower legs all day. When it ramps up, the pain will focus usually in my right leg first, at the upper portion of my ankle, just to the right of my shin bone. The pain will radiate up the right side of my shin to just below my knee. That pain will start as a twitch and a dull ache but it ramps itself up some days until I'm screaming and hitting my legs trying to change or distract the pain. Once it begins, it also will go into my foot and toes. If it starts into my toes on my right foot, it will begin to immediately start on my left as well until both legs are completely consumed by it. All I can do for them are muscle relaxers and hot packs. I may have a few hours of peace in a day, but these events happen every day at some point. I'd say at least 4 days a week they get so extreme I can't function. All I can do is sit here and cry. I feel like I'm going to break long before the movement clinic even sees me.

If anyone has any ideas for me, I'll take any help I can get. If I have not heard from anyone by the end of the day, starting Monday, I have to start pushing in new ways. I'm afraid of taking this to the ER. All that will do is land me the same looks I always get with this, and since I'm lucid through the events, they will dismiss me and likely think I'm just there for pain killers. I don't want painkillers. I want them to help me slow this down. The movement in my legs begins when I wake up, while the leg pains tend to happen more in the early afternoon to evening. The jerks happen on and off all the time, but we are pretty sure they don't happen when I sleep.

[Ihavewhat]

So sorry to hear about your situation!! Keep looking and don't give up. I live in VA and my neurologist is great. (Dr. Galbreath) I also see a movement specialist at VCU. I sounds like you live in TX but if you could get to VA the Dr. name is Dr. Test. I am currently doing PT which seems to help. I am also doing cognitive behavioral therapy and speeches therapy. I am on Zoloft which they explained that it increases the neurotransmitters which helps with sending the signals from my brain to my body. Though I still have symptoms, they have decreased significantly! My neurologist did fill out my FMLA. Don't give up. Find one that will take you seriously.

[Browninger]

I can empathize with you. I was diagnosed with psychogenic movement disorder 9 years ago. It started after having 2 procedures for kidney stones. The pain would not go away, Even as I am writing this I am having pain that is identical to a traveling kidney stone. The pain is real the cause is not! Your job situation parallels mine. Brain fog, concentration issues, missed days, no personal time left, LOA, no income, I finally had to quit to use my 401K for expenses. Because I was 55, I was able to apply for disability and was awarded it within a few months. I have most all of the same symptoms you described on a daily basis but possibly less severe. The myoclonic jerks in my torso almost knock the wind out of me. The knife stabbing pain in my feet cause my knees to go to my chest. The muscle rippling facsiculations happen without pain, I just have to stop what I am doing and rest when the brain fog sets in.

I was able to find a neuropsychologist that was familiar with this condition. She suggested a gluten free diet and probiotics, Making these changes did not eliminate the symptoms but I feel better in general. Having a mental health therapist helped until I was told by 3 different ones that they did not think I was in crisis and seemed rather normal. Over the years I have just accepted this condition as one of the possibilities in life. It took me a few years to find that peace. I am no longer embarrassed when I attempt to exit a checkout lane and I can move my legs. i just explain " give me a second". I take deep controlled breaths, relax, smile, slow my brain down by loosing the sense of urgency, and my legs move, Though rather cerebral palsy like at first!

9 years ago, the 3rd neurologist told me " you are lucky, people do not die from this"! I took a long time to process exactly what he meant by that. I am no longer fearful. You may have noticed that your symptoms get worse when you are talking about your condition. Yup, that happens too. I have found that concentrating on the negative effects with fear, worry, frustration, and hopelessness is also not therapeutic.

I am sending healing energy. I am hopeful that you too will find peace in this. Life is indeed different with FND.