Just joined

[Mikey1960]

Hi l am Mike, just new to the group and hope to get some interactive help on my condition and symptoms

[tabey]

Welcome Mikey1960 this is kinda new to me also but always around if you need to chat,rant, so on so on

Tabe

[Mikey1960 in reply to tabey]

Thanks Tabey

[Mygeordiebud]

Hi Mike

What are your symptoms and conditions as FND has a wide range of symptoms and conditions.....

[Mikey1960 in reply to Mygeordiebud]

Hi my conditions are as follows full body tremors balance ,dizziness, neausea weakness and tired all the time. Blurred vision Forgetfulness is another thing to add as my memory isn’t as good as it was also weekly bouts of feeling so bad it totally inconpasitates me.Any help would be grateful

[Mygeordiebud in reply to Mikey1960]

Hi

Mine started last August after a spinal decomposition at L4/5.

About 2 weeks after the operation I noticed I couldn’t lift my left leg straight up when lying flat or lift the leg up when siting. I then developed a tremor in either my arms or my legs followed by vertigo or and off over months and I couldn’t-stand up for falling down.

Then my right leg developed same problems as my left leg.

Followed by paralysis in my left arm that would last from a few minutes to 20 mins. Next my legs began to be paralysis followed by my right arm, now when I wake up it can take me up to 20mins to get my limbs moving but when all 4 limbs stop working it is scary as your thinking to yourself I hope they come back and at present they have, though on Monday I was lying on my sofa when left arm decided to stop working and took 3 hours for movement to come back.

Cannot walk any sort of distance as get exhausted, same as getting my arms legs working it leaves me completely knackered.

Mine is slowly getting worse no sign of it getting any better, also my wife suffers for Progressive MS so help each other the best we can....

[T-KY]

Hi Mikey1960

I think this site has helped me to see that this is a real disorder and different for everybody. No matter how big or small your symptoms are it still makes you feel like you are alone, but you are not. I was diagnoised in June 2018 after mine came out of the blue. It started with my right hand shaking they did all the tests, MRI, CT, blood work, etc... and found nothing and released me. Since then I saw a neuroligist that said this is FND and referred me to the MoRe Program in Louisville Ky where I live. Apparently this is the only program in the US specifically for FND. Since then it has changed and now my hand, head, legs all shake and my face muscles twitch. I makes it hard to walk and talk. But sometimes I have a good day and it is like nothing ever happened. This is what makes this condition so frustrating.

You cannot find the trigger. I can shake all day and then all the sudden it will just stop. Most the time I wake up shaking and it just progresses to get worse.

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.

Let you know how it goes.

T-KY

[Mikey1960 in reply to T-KY]

Thanks T-KY. for replying, keep in touch

Mikey1407👍

[123lisa]

Hi there welcome 😊

[Mikey1960 in reply to 123lisa]

Hi Lisa welcome to the group 👍