Information regarding my wife's recent Neurology appointment.

[LEEJUNFAN]

Hi everyone!

I'm updating you on my wife Kim's recent visit to Salford Royal Hospital.

She was referred here as her Neurologist feels her FND is stress related and felt that she should see a Neurological/Psychologist.

The Lady we seen I have to admit was a lovely person who was very easy to talk to and truly had empathy for people with this condition.

We put many questions to her and in all honesty, she had to admit that there's part of this condition that she doesn't have the answers to, in relation to why it comes on.

She felt Kim was not depressed and was handling this very well although she felt Kim was anxious, but taking into account the symptoms she deals with, this was understandable and she felt Kim didn't have to go on any depressant medication.

One thing she did bring up with this was interesting to me and i'm curious as to what you all think on this.

She talked about soldiers in world war 1 who went through some terrible stressful events, and after coming out of the war, started suffering symptoms exactly the same as FND.

Now these soldiers had said that stress couldn't have caused their symptoms because they were tough minded individuals doing their jobs as soldiers.

The point i'm getting at is this.

The Neurologist had told us that one of the interesting things about FND in her experience with patients with movement disorders, is that a high majority of people who had it were very strong and positive minded individuals, were people who tended to be highly driven in their actions, be it work or whatever.

She felt that it's like a pressure valve that has suddenly busted, and in relating it to the soldiers experiences, it's as if the body has suddenly broke down through hidden stress etc that the individual has kept inside - a bit like post traumatic stress disorder and that the brain signals have gone into overdrive.

I had to be honest and as I've always said, Kim was experiencing a high amount of stress at the time she collapsed and she was and still is a very driven person by temperament.

I had to ask her that if stress is a cause, or part of it, why do children who are very young and are not stressed, manage to get FND.

She was very honest and had to admit that these questions are still unknown and she even admitted that she has seen fellow Neurology colleagues side sweep FND because if the brain scan has come back normal, then all must be ok, which I know many of you have experienced in your own appointments.

Her honesty was very refreshing to hear I have to admit and I respected her.

She had a really nice and in-depth discussion with Kim and advised her to carry on doing the things she enjoys and did ask her if she wanted to be referred to counselling to see if this could be of benefit but Kim is leaving that option open.

She was well aware of John Stone as I had brought my copy of one of his reports to her but she had to admit that there's still a long way to go and underfunding is a major issue in getting the support out there.

She feels she doesn't need to see Kim again so we're basically having to get on with it and keep on marching on as we have to do on this site.

Kim has now been recently diagnosed with Pericarditis, fluid and inflammation around the heart, which makes her out of breath a lot and is waiting to see a Cardiologist.

I asked this lady if she felt all this was connected as in like autoimmune causes, but she felt it wasn't and ironically enough, her own Nephew in America has Esoinophilic Esophagitis, and he's only 7 years of age and Kim has this also.

Now we're back to the same old question, does stress cause it or contribute to it?

In all honesty, I really do not know, but as Kim collapsed whilst under stress, i'm tending to feel that it has had a role in it and a major one at that and I recall a Paramedic saying to me and Kim about how stress has a massive impact on the body.

I told the Neurologist about this site and about how many people are told the same thing about stress causing FND and how it upsets them and she was very understanding and I also asked her why is it that some people undergoing enormous stress don't get it.

She really couldn't explain it and I respected her for it because she had total empathy for people with this disorder which I liked.

She's now writing a letter for Kim as i'm having my fourth attempt at getting Kim rehoused into a Bungalow but it's a hard fight and I won't give up because i'd rather drop fighting for my wife's cause than sitting back.

Sorry for the long post but we'd appreciate all your replies because we are all in this together and we have to keep on fighting, although it gets tiring at times.

On a final note, we watched a programme the other week about a gentleman who had lost both his hands and had artificial one's fitted.

He has managed to start to retrain his hands to do tasks again and yet i'm asking myself this question; if his brain can make the signals go to his hands, why is it that people with FND can't do the same and they are trying so hard to do so?

It's a question I forgot to bring up - sorry folks!

Loving wishes to you all.

Tony & Kim xx

[nurmihusa]

Stress is the major contributing factor to FND that we have any hope of addressing - for the moment. Is it the cause? I suspect not. But since we have no access to that, we have to work with what we have. Which is stress.

Stress is both conscious and unconscious. And there are always more than one stressor in the mix.

So what works best at eliminating or reducing stress? The list is enormous and is very different for different people. What doesn't work for patient A might work for patient B. And vice versa, That should be heartening, not daunting. What it means is if treatment X or pharma Y don't work for you - you cross them off the list and move on to something else.

There is no one cureall. And I suspect when all is said and done there will never be one cureall because FND is very probably heterogeneous (having many origins) - since it seems to respond to various very different strategies, when it responds to anything at all.

All of us appear to have more than one serious thing wrong with us and those things cover the spectrum. Making sure those conditions are treated promptly and properly and the stress surrounding living with those conditions needs to be addressed and minimized as best as possible.

Doctors who send us out the door with nothing for FND are a blessing. Seriously. Because they are admitting (in an unprofessional manner, but still) that they are incompetent to treat us. They free us to find someone who IS competent to do the job that's needed. Move on and waste no time arguing with an idiot.

[Hidden]

Tony & Kim.

You write a most heartfelt and thoughtful post.

I thought Nurmi gave good insight into what is known versus not known about our various conditions.

I would hope that Kim receives very prompt and diligent care for the pericarditis and the esophagitis as those represent two very serious conditions of the body being under attack. The stress of those conditions alone are a struggle for Kim to deal with and recover from.

The movement disorder and symptoms that get called FND also deserve attention and treatment from medicine. It is difficult to form a logical path for how best to achieve that which is part of what I believe you are grappling with in your post.

I do hope you can rest your mind for a while from searching for the cause of FND as you focus on finding housing and attending to these other urgent conditions. The role that stress, in its many forms in life and in how we function as living beings, will be much debated for the foreseeable future. Defining it may take more from our lives than we realize. Perhaps give yourselves some time to step back from that conversation and have renewal.

Medicine also wants to play the old childhood game known as " follow the leader." When they don't know the answer individually, doctors often take cover behind that which is thought to be leading the way, at least until truth emerges. To this day, stress is always made part of the equation. As Nurmi and others have said many times here, stress can only be considered in the context of the individual. It is almost impossible for me to conceive how any doctor can interpret that effect on the individual.

We will keep asking and searching for cause as that which can be applied to the broadest group of sufferers. There are many clues yet to be uncovered because the human body is a universe of details unto itself much of which remains unknown.

I support you every step of the way. Choose what is most important to you today and get that taken care of first.

My loving best for an easier and more restful tomorrow.

Dan / Seattle

[FND_ Partner Administrator FND Hope Australia FND Hope UK Group Admin FND International Volunteer FND Hope]

I think it is worth considering that stress, emotional and physcial, is processed by the same HPA axis (your fight or flight modulator). There is a tendency to hear the word stress and assume it is emotionally charged. However, the same fight or flight response kicks in when the body is physically fighting illness. The more I speak with doctors the more I am finding that they see functional signs in their stroke patients, cancer patients, parkinson's, etc. I ask what do you do? They say... Nothing different, I continue treatment. I get them whatever help they need. My reply... Then do the same for FND. We find within the various groups that treating other health related issues minimizes functional symptoms.

Keep fighting and keep advocating!

[nurmihusa in reply to FND_]

Yes.

[LEEJUNFAN in reply to FND_]

Hi there!

Thank you for replying.

I would like some feedback on the following if that's ok.

I'm constantly fighting on my wife's behalf for her to be rehoused from a flat that we're in and for her to be rehoused to a Bungalow due to her symptoms.

Despite all previous medical letters our local housing will not move her due to an age restriction on Bungalows as they are only for 50 years and over.

Kim is 38 but I'm only 2 years of 50 myself and all that they keep saying is that a lower ground flat is suitable as we're on the 2nd floor level.

Kim has become so sensitive to noise now that only a Bungalow would minimize her symptoms and flats are too noisy.

I've had MP letters sent, Neurologist letters, you name it, even legal aid.

I'm sending new letters in shortly from her recent Neurologist visit but I would appreciate any feedback because she has now been diagnosed with Pericarditis which is inflammation and fluid around her heart and I believe all this is from not being settled at home due to noise issues which upsets her FND.

I know a Bungalow would minimize a lot of this.

Any help would be appreciated.

Many thanks.

Tony

[cgarff]

well put my friend, I have asked those questions myself many times. Along with that, why is it that so many people who have experiences abusive situations go on to lead normal lives, but that is one of the first questions they ask with this. Have you been abused. I know so many people haven't, but it goes along with the others. Why do some people get this, and why don't others. It is so crazy.

I am currently awaiting the results from my Neurologist, and am in hopes that she has something to show me, or say about the 3 day ambulatory EEG that I did at the beginning of the month. My last night with it on, my body had an all out party from head to toe. The only thing it didn't really show that I can think of is me walking, talking or trying to reach for things after seizing. My face went nuts, head, neck, arms, torso, legs, feet, seizing, shaking, twisting and turning etc.. I just hope she has something. If not even a copy of the video during that 2 hour time frame would be helpful to show disability.

Sorry to hear about Kims heart issues. They are not fun. I had Supraventricular Tachycardia years ago and had surgery to repair it, but found that I also have a bicuspid atrial valve instead of a tricuspid, so I have to go and see my heart doc each year. Thank goodness its still good for now and don't have to get it replaced.

Please give my love to Kim. Hugs to you both and keep us posted.

Cheryl

[nurmihusa in reply to cgarff]

Yes, they do get fixated on abuse or huge traumas as if only those count. But what matters is not what has happened to you but rather how you respond to it. Highly empathetic people will respond very differently to a stressful situation than "normal" people. Let alone compared to the corporate sociopaths that our societies idolize these days.