FND help?: I was just recently... - Functional Neurol...

Functional Neurological Disorder - FND Hope
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FND help?

T-KY
T-KY

I was just recently diagnosed with FND in June and I am still waiting to get into a movement clinic (MoRe) in Louisville KY. This started April 4, 2018 and I didn't feel right at work and started walking to the left. Then someone on the phone ask if I was ok because I sounded funny. I went to the hospital where they ran MRI's, CT, EKG's, etc.... The ER doctor said he could not find a cause and I didn't have a stroke.

The doctor that diagnosed me, did a initial evaluation and after about 15 minutes he determined this was FND. He was able to show me that if I am distracted in some way my right hand would stop shaking. That was great at the time it meant that this is not MS, Parkinsons, etc.... Now my head, right hand, and legs are shaking.

They say this is caused from stress but I have a hard time understanding this. I can be fine all day (no shakes) take a 1-2 hour nap and wake up shaking? I can also shake all day and then just stop at night.

I cannot find a trigger for this. I would think if it was stress it would have to build up not just wake up stressed.

I just don't know how to get it under control.

Any ideas?

6 Replies
oldestnewest

Hi,

It's confusing and difficult to get your head around. Basically it's a "software" problem rather than a "hardware" one. The conscious signals to move are going through the wrong pathway. fMRI's showed a use of the fight and flight part of your brain. This means that they don't co-ordinate with the unconscious signals as the fight and flight pathway is longer than the route they usually take. So an interference pattern.

The physio distraction techniques work well with many, so hang in there. If you think of learning something new, you suddenly think "I'm doing it" then it all starts to go wrong. That's because you are thinking about it. Distraction is key. This means no symptoms when you are asleep too, but it can come on when you wake up. Trouble is it's like someone telling you not to think about the pink elephant in the room. All you then can think of is that pesky pink creature.

Read the lifestyle bit. Pacing is important. We tend to be a people who are stubborn, over achievers, keep going when we should rest. Frustrating as people treat us like we are slackers and that can't be anywhere near the truth. Stress will make things worse, but it doesn't mean it caused it. Don't beat yourself up, you may not get to the bottom of why. Mine was an asthma attack, sometimes it injury. It can stop instantaneously even after years too.

I hope your physio appointment comes up soon - keep in contact with them. Don't over do things in the mean time. Don't "try" together better. It can't be done by force of personality or pushing through. There is a list of supplements people have found handy on the FND Hope page too. At worst you would be investing in expensive pee.

Good luck

T-KY
T-KY
in reply to thinkin

Thank you for the information and I will continue to investigate the physio distraction techniques, so far that is the only thing I have seen work even if it is temporary.

thinkin
thinkin
in reply to T-KY

That's ok. I'm 5 years in and as stubborn as can be. It was learning to accept things and pace myself - I've been too ill to do physio. It's the old serenity prayer it's always the "wisdom to know the difference" bit we struggle with.

I had vitamin deficiency that may have made me more prone. I'm in the UK but your family doctor will need to test you for at least B12 and vitamin D if they haven't done already - I was also B6 deficient - the joys of thyroid disease. The recommended levels on the FND page are higher than the "normal" range. They may say they are normal but ask for the actual levels so you can compare. You can get vitamin sprays that cut out the risk you are not absorbing them from your gut.

Take your time reading all the stuff. It does take a while to wrap your head around it all.

Your tremors are not necessarily caused by stress. FND is still mostly not understood. I recommend reading or listening to the Kindle version of the book Functional Neurologic Disorders, volume 139 of the Handbook of Clinical Neurology. It discusses some theories of FND that don't seem to agree with one another. The book will help prep you for Frazier Rehab.

Let me know how the Kentucky place is. I want to go but idk if Medicaid would cover it.

T-KY
T-KY
in reply to Jesdue

Hi Jesdue,

I have been trying to get into the program, but now they tell me that they only run one clinic a month and they only select 3 people at a time. So of course I called to see when I could get in and they told me that first you have to have a referral from a doctor sent in. Next the doctors in the program will review the doctors notes and make their selections for the next clinic. When I spoke with scheduling the other day they told me that they are just now reviewing the referrals from May. Apparently there are a lot of people that have this disorder. So I called back and ask since I am local is there a way I could get an appointment with one of the doctors in the program since it looks like I can't get into the clinic. They are supposed to call me back Monday and let me know if or when I can get an appointment. I just need some information about this and I am going crazy. I just need to know if I can get better and what I need to do to help the situation.

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