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Please help me

PostPosted: February 14th, 2015, 6:10 am
by Little Lost

Today I have just be diagnosed with REM sleep without atonia. This loss of motor inhibition is often an early sign of neurodegenerative diseases including ... I am terrified so so scared.

I just want to give up.

Re: Please help me

PostPosted: February 14th, 2015, 6:54 am
by Yuliasir
But this first of all means you are prone to night walking or speaking during sleep - which is really common and does not evolve into MND. Some medication also could cause this.

amyway it is not an MND diagnostic hallmark.

I mean for people with RSWA No.1 in diagnostic list is REM sleep behaviour disorder, not MND.

Re: Please help me

PostPosted: February 14th, 2015, 8:02 am
by garym
Good morning Helen,

I want to respond more to you later, but I'm out the door right now for a swim meet. Just did a quick study of REM sleep without atonia, pubmed: "RSWA is a requisite diagnostic feature of RBD, but may also be seen in patients without clinical symptoms or signs of dream enactment as an incidental finding in neurologically normal individuals, especially in patients receiving antidepressant therapy"

Please don't jump to worst case scenario.

Talk to you later,

Re: Please help me

PostPosted: February 14th, 2015, 10:42 am
by SecretAgentMan
Isn't it funny how our fears have a way of running away into the worst possible outcome even when the situation that we are actually in is nowhere near that projection? That's all your fears are. A projection. Each circumstance is what it is. Your sleep issue is simply a sleep issue. People all over this world have sleep issues. It doesn't mean anything. It just simply is. I don't believe sleep issues like this are permanent either. With the right actions you can probably resolve it. So what is serving you in worrying? Why give up when you haven't tried all the options on the table? We can support you and encourage you but the resolve to carry on has go come from you. Hang in there. At least with answers like this you can focus on solutions that have worked for others. I bet you'll find success stories if you look. Decide now to be one of those success stories.

Re: Please help me

PostPosted: February 15th, 2015, 11:37 am
by Little Lost
Hi again.

Thanks for your time. Unfortunately sleep walking is not a symptom of what I have been diagnosed with. Sleep walking occurs in non rem sleep. True REM disorders are not a common , only around 0.01% of population and normally in males over 50 which I am not. They can be associated with alcohol withdrawl or use of antidepressant s which I don't use. Therefore it is classed as idiopathic REM disorder.

Why the panic. Well REM disorder with no neurological symptoms were initially described as idiopathic. Turns out it is far from it. Within 5 years of diagnosis 33.1% will develop a neurodegenerative disorder, 75.7% after 10 years, and 90.9% after 14 years. Mostly these are rapidly deteriating PD ( always with dementia), or MSA. Therefore this is no longer classed as idiopathic, but as the start of neurodegeneration. I.e. neurodegenerative processes initially target the circuits controllong REM sleep. Hence my panic.

Therefore receiving the letter with the diagnosis, in effect was saying I have a 90.9% chance of being senile in 14 years, but symptoms can start anytime. What a nice valentines present. I have been offered melatonin and light box therapy. UK NHS for you.

So since my last post I managed to get in touch with an REM disorder sleep specialist neurologist in Mayo ( Minneapolis ).( don't ask). I have also spoken with Prof Carv who has put me in touch with UK Dr Swash.

Basically what they are saying is this.

1) REM sleep without atonia (RSWA) can sometimes be diagnosed due to fasciculations turning up on a PSG recording during REM sleep.

2) However if fasciculations are normally present during wakefulness, ( which mine obviously are) they will also be present thru all stages of sleep ( BFS suffers fasciculate while asleep as do PNH patients). This is a normal background for us.

3) It has been suggested that my PSG sleep study REM recordings need to be re-read with respect to the REM sleep recording part. I need to see if the EMG activity during REM sleep appear more typical of fascics ( which in me is a normal finding) or the if they recorded more erratic activity. If it is the former then he doubts I have the disorder and what they are seeing, and not realising is a typical bfs patient sleeping. If it is the latter ( i.e. irratic full movements and not just fasciculations) then I obviously have this " REM with loss of atonia ( RSWA).

We are not aware of me ever acting out dreams, having irratic actions, thrashing around, flaing arms etc. I don't have apnea, and I never snore. I just wake up a lot.

Yuli, Gary and SAM, thank you so much for taking the time to answer me. I have a couple of appointments in March. I will update you, but feels like I am walking in thick mud.

SAM I hear what you are saying, but I can't let go because I am too far down another path. It was good of you to try.

Re: Please help me

PostPosted: February 15th, 2015, 11:20 pm
by SecretAgentMan
Little Lost wrote:SAM I hear what you are saying, but I can't let go because I am too far down another path. It was good of you to try.

Many people say they "can't" when in actuality they really mean "won't". I'm not judging, as this is something we all must determine for ourselves. You may want to consider trying anyway though. I've stubbornly pursued paths that made me miserable because logic and reason seemed to indicate that I was doing what was right. It didn't feel good though because I was fighting what was. You'd be surprised how quickly you can recover when you decide to accept what is and adapt. It's the difference between swimming upstream or going with the flow and gently nudging yourself along in a more positive direction. Fighting the current you kick your own ass and get nowhere fast. Going with the flow you let nature do all the work and you can use your energy to really propel yourself in the right direction.

When you're fighting that current it feels like the right thing to do sometimes, even though you might not be getting anywhere. To just accept what is feels like defeat, but strategically it pays off. I would bet you a steak dinner that those 10% of people that don't go senile probably have something in common. They are likely the one's who don't drive themselves crazy with negativity and statistics disguised as practicality. Sane people don't fight the current. They learn to go with the flow.

Your post title said 'please help me'. My helping advice is to learn to go with the flow. It is NOT defeat to do so. It is tactical and strategic. Maybe try thinking of it that way... :)

Re: Please help me

PostPosted: February 16th, 2015, 1:39 am
by Yuliasir
I see two points making me think your PSG should not be interpreted in the doooming way you did: 1) accroding to your report, you still do not have classic RSWA picture associated with NDDs (severe vocalisation, violent movements while sleeping with remembering the content of the dream etc.); and 2) As far as I understand, you are about of my age, so in 14 years you would be just around 60, which is still VERY early for Alzheimer, PD or Levi body dementia even for onset, not speaking about full size blown disability. I suppose people who were involved in REM studies and then followed up to NDDs, resulting in figures you cited, were much older that you are now...

Anyway, the approach which your professional consultants had demonstrated (that your PSG should be re-estimated from the BFS point of view) seems really promising to me, hope BFS again would be a final conclusion. And we all know that impaired REM with some increased activity of motor centers is still common for prolonged stress (stressed people do not sleep well, have a 'thin' sleep, they speak while dreaming, and heavily stressed people in PTSD could even have nightwalking and violent behaviour without any future development into MND or NDD) - so again you may be mislead in the same way as we all are mislead with the twitching as exclusively MND symptom (while we know it is not).

wish you a good resolution of this issue (and of course I wish your sleep to come back to you, as having a 'thin' sleep is a real disaster).

Re: Please help me

PostPosted: February 16th, 2015, 12:03 pm
by Scboy
First of all let me say your posts have been extremely helpful to me. You are obviously very knowledgable and intelligent.

You being a doctor and up on the latest research, I doubt there is much I could say from a medical standpoint that would make you feel any better, but I will share a story from my last appointment at Duke. I am well on my way to an idiopathic diagnosis and out of frustration I told the dr "look, you have someone like me with good insurance and is willing to spend a lot of money on testing why don't you run every gazzion tests you can think of to get as complete of a picture of what's going on as possible, we have nothing to lose.." That's when he interrupted me and said we do have something to lose with that approach. He said" I could take practically anyone on earth and run all these gallion tests and I will find some "abnormality" on something. And with that "abnormality" I could probably get the ball rolling towards a "possible" diagnosis of "something" and have that person leaving my office scared out of their mind. He said my point is many of these tests are designed to confirm something we already suspect and the psychological damage of a false positive can be devastating.
I don't know what other symptoms you are having but these neurological tests can be misleading as you are probably aware. Hang in there.

Re: Please help me

PostPosted: February 19th, 2015, 6:36 pm
by wjjw
You said you were diagnosed with ... xxx... yet they need to re-do ...yyy... to determine if this is even an issue to begin with, which it may not be. I wish you well, and hate to see anyone suffer, but my gut tells me that this is a weird artifact of a complicated process, not fully understood (just like BFS), and will basically end up being a non-issue. What exactly prompted you to have this "study" done? How do you feel, in general?


Re: Please help me

PostPosted: March 22nd, 2015, 1:14 pm
by Buzznerd123

Re: Please help me

PostPosted: March 23rd, 2015, 8:59 am
by BFSBurger
Sleep disorders are a common hallmark of BFS.

Probably one of the most common things here. Cortisol dysregulation is a big element for some people here. Other sleep related issues run the gamut from waking up too early - body and mind racing ... to night terrors ... to sleep paralysis (raising my hand on that one) ... including hallucinations (yep - had that too) ... to countless other things. As I recovered overall, these things faded. In fact, even today - I can tell when I am deviating from my regimen because the first thing that happens is waking up at 4am for no reason. That's actually my first signal that my body is beginning to relapse and I need to get my act together again.

I believe that BFS related sleep disorders are moreso a sign of fatigue and central nervous system excitability. Mental, physical, and emotional fatigue. Nerve, brain, and muscle excitability. When they say fasciculations are a factor - well - your body is in an intensely over-excited state right now. Agitated. Unstable. This should give you some peace of mind because its an indicator of a disorder that has nothing to do with NMD. If anything its incredibly reminiscent of hormone disorders (not necessarily sex hormones). The cause of the fatigue could be a virus or other infection. It could be a disorder of the endocrine system (hormones) or neurotransmitters (serotonin/dopamine). I guess my point is: abnormal sleep issues are seen in countless disorders that range across many spectrums. There's no need to pick the one that scares you the most and assume yours is because of that.

When BFS started for me, I was dropping things for no reason, and unable to form sentences. No doubt those are signs I would be senile in 10 years also ... but then it went away.

Therefore: One other very important thing to remember about BFS: it mimics other diseases. That's part of the difficulty with BFS. So it will present as something that looks, smells, walks, and talks exactly like a certain disease. And then it will move on to something else. Point being - you're going to think you have every major disease in the book by the time its done with you. So try to remember that now, and try as hard as you can to ignore the taunting. Ignore the teasing. Ignore the harassment BFS gives you mentally, and remember that we've all had whatever new thing you're dealing with.

Sleep problems are a sign your body is fatigued at a level that is very deep. Rest your mind. Rest your body. As much as you can.