Neurologist review?

[MONIREN]

I was diagnosed with FND 2018, lately I've been jerking or jolting more often. Plus finding everything such a battle, losing function of my hands, forgetting things. I know I'm not as bad as so many others. I also have heart issues cardiologist told me to live with. Now stomach issues that gp can't explain. Not getting much sleep. A lot could be anxiety, but what comes first, anxiety or problems? Just not sure about seeking more answers. My husband is very unwell, cirrhosis, kidney failure, heart issues and constant lymphoedema infections. Back during diagnosis, neurologist said FND until more symptoms. Do I spend time and money seeking answers that might not be there? I don't expect anyone to tell me what to do, just suggestions. Moni

[Sugartime]

Hi, our daughter has had FND for 18 months through a work injury it has changed all our lives this debilitating illness because of the changing symptoms and constant fatigue. Within this time period the medical profession/ neurologists don’t have answers and most are rude and extremely ignorant. Take care

[MONIREN in reply to Sugartime]

The neurologist I saw and have now a referral to, is kind and listens. This morning I phoned my gp and she has been wanting to go further. Others were not. I didn't want to start again, jump through so many hoops! I'm sad that your daughter had it thrust upon her, mine was more gradual. I feel for her and you and your family. Take care. Moni

[Junebeatle]

IMO I would seek out a functional medicine doctor who will look at root causes for your symptoms. I think they look at labs & the body in a way as to integrate the whole person and all it’s parts back to a healthy state. It wasn’t until my functional MD tested me for Lyme disease after having debilitating FND diagnosis for 11 years that I started to thrive again.

GI symptoms: Could it be food sensitivities? Possible microbiome imbalance, such as Small Intestinal Bacterial Overgrowth, etc

Cardiac: Is there a treatment that could improve this for you? The heart & brain work together, improve one you improve the other. Ex. I had cardiac ablation in 2020 for palpitations and my concentration & fatigue improved dramatically. The doctor post follow up says “ of course it would, you’re now getting 30% more oxygen & nutrition to your brain”. My shock was why they would let me go like that since 2012?

Sleep/anxiety: Have you tried any adaptogens for this? Ex: medicinal mushrooms 🍄 (I use a powder in my coffee that helps with chaga, lions mane, maitake, and cordyceps), Ashwaganda for sleep, Matcha 🍵 has high l-theanine content.

Apollo neuro makes a wearable that I ❤️. Really works for sleep & stress management.

Good luck to you!

[cocoferraro]

HiI am so sorry to hear that you are so unwell,

I have had FND 9 years and have learned to take anything it can throw at me. I feel so ill some days that I cannot function, but my husband tells me to go with it and just sleep, relax etc, but suppose I am lucky in the fact that we are both retired.

I have a fantastic doctor too, and she is trying and has tried all she can do for me.

I too have notice lately that things have got a little worse, my memory is worse and symptoms are raising their ugly heads again.

To be honest, I think this is a disease which takes many forms and the doctors are learning about it more all the time, plus some people may have good, or bad gps perhaps depending where you live. I suppose I have just come to accept all that FND throws at me as I cannot fight it.

My husband has just had open heart surgery and bypass, I am sure that this makes all symptoms worse due to stress.

Just make sure you tell your gp about each symptom as it arises and treat each one at a time,

Will be thinking of you, please take care x

[MONIREN in reply to cocoferraro]

I put a reply to you there, must have not entered it in the correct section. All the best with your husband. Thank you for kind words. Take care. Moni

[MONIREN]

Thank you, as I said, so many have worse symptoms, I try to take one day at a time. I've had to step up to relieve my husband's role, I am fortunate to have a great gp, language barrier sometimes, but always easy to get into, plus receptionists ready to help as I forget words. A smile goes a long way. Just lately allowed things to get on top of me, can't go back on antidepressants for so many reasons. Having support here just helps me to put things in place. Thank you! Take care. All the best with your husband.

[cocoferraro in reply to MONIREN]

Hi there,You sound like you are very strong and have really understood what is going on with you, My GP always says that if you "REALLY GET IT" then you have the power and strength to battle FND, I am on lots of meds but am confident that my GP has prescribed the right ones for me as an individual, She has known me for a long time and knows my history and circumstances which helps a lot.

You sound just like me with your forgetting words on the phone, but good receptionists etc, and agree with smiling!!!! Please try not to let things get ontop as all of us are always here to talk to you, so try to keep your chin up,

sending much luv to youX

[MONIREN in reply to cocoferraro]

Thank you. I'm not on meds for FND, I already take 24 a day for my other health problems. Talking here does help. My husband too close to the problem, he wants to solve it, as that can't happen, ignore it. Which I totally understand, he has enough to deal with. Yes, I do need to find my inner strength. You sound like you have it, I hope that when or if you have a down time that I can be there for you. Take care. Moni

[Brokendeer]

Hi, having FND as you know causes your nervous system to become hyper and send so many unnecessary extra signals that it overloads the brain. Anxiety and stress (in all forms!) is terrible, it increases the Adrenaline in the body and then the brain demands faster responses and quicker processing of nervous system signals - you see where I am going with this?

Your situation has changed dramatically and adjustment is going to take time - allow yourselves to accept this fact, `Life is not a sprint, it is a marathon'.

You personally are having to deal with your FND symptoms really without the usual support that you need because you are now supporting your Husband physically and emotionally. I suspect this has put your own Adrenaline levels into overdrive?

Effectively your brain has gone into `Survival' or `Fight, Freeze and Flight' operation to help you cope with the new situation - this is most probably causing the more severe of your latest symptoms, like hands, brain fog forgetfulness and more sleep disturbance. I have Motor FND and trust me, even an action movie Adrenaline rush will put my legs into distress mode! So I can imagine what you are going through daily.

A tip, I can give you that I found useful was to try and reduce the anxiety/Adrenaline levels so that the brain has time to process and adjust to the incoming random signals and to prioritise them properly. Pacing and slowing down will help you both and taking some moments of time when needed to just sit and concentrate on smooth, regular steady breathing or a little light singing if you prefer will help calm everything down. Remember the brain does not store any reserve energies (like other organs in the body) - it only draws on the body resources as it needs them, so keeping a steady routine of normal breathing, nutrition, happy emotions, hydration and short mental activity sessions will help enormously.

Medications will be affecting you both in several ways of course, but try do what you can to mitigate those stressful thoughts, spend only a short while analysing them, accept/acknowledge them, then move your mind on to other things.

Basically, no good health comes of stressing about things you cannot possibly control - it only robs you of those precious quality moments you could have enjoyed; if you were not worrying about other things?

Look for the calm in the Storm!

[MONIREN in reply to Brokendeer]

Thank you for your kindness in your reply. It does explain why I feel like a wound up spring, ready to jolt or cry. Does sound right humming and letting go, to relax the brain, I'm trying to make sure what we eat is nutritious. I do overthink things during the long early morning hours, by the time I'm up, I've already put in a day of emotion.