Road block

[MONIREN]

Saw new neurologist, she offered only psychologist, I've been there in the past, all they do is open all the boxes you closed and moved away from. Physiotherapy to improve walking, might do that when the pension allows. Levodopa has stopped working after only 3 months, I was only allowed minimum dose, so the much hated jerking has returned, plus the weird walking. No suggestion how to improve slow speech or loss of fine motor skills. There is only so much they can do, which is why my other neurologist refuses to see me. Until they figure out the cause, they can't fix it. Just have to cope and find my new normal, again, FND keeps moving the bar. For others out there keep trying, don't give up. I'm not going to. Take care. Moni

[Daesin]

Gentle hugs 🤗 One breath one step one day.

Best of 🍀 luck

[Misstea]

At least try to see about speech therapy but definitely try and find a better neurologist if you can. There are plenty of jerks in this world and your current one sounds like one of them. Try to make sure you look for a neurologist who deals with movement or if possible, a functional neurologist.

[MONIREN in reply to Misstea]

I saw speech therapist a few years ago, she said she couldn't help. This is the 3rd neurologist, hard in regional Australia, not like in the city. I'm carer for my husband, so to get to city difficult, plus hard on a pension. After the bill this time, it will take a couple of months to pick up financially. Will try to do research to find where I go from here. Thank you for the suggestion and reply. I just had my 5th heart stent, so my health not the best. Just have to focus on what I can fix short term, and cope with the rest. Take care. Moni

[HenriettaPoultryfoot]

Moni -

You are continuing to plug away at the insidious FND beast. I applaud you for that. Although FND attacks each person differently, we all have constant trials and symptoms to endure.

I feel that this group “gets me” better than most doctors do, including many neurologists! Having understanding, support and encouragement from this folks is therapeutic in my opinion.

I hope you and your husband have a pleasant day. I look for something positive to focus on every day. I hope you find good in your day.

HenriettaPoultryfoot

[MONIREN in reply to HenriettaPoultryfoot]

Thank you for your kindness. I am fortunate not to have severe symptoms, just things that make life difficult. I do try to help others. Yes, this forum is so helpful. I occasionally let off steam, in case someone else has a suggestion that I haven't tried. Thank you. Moni

[Batty1]

Have they ever look at you for MS?

[MONIREN]

I have completely clear brain scan, mri of spine only shows degenerative spine, all blood tests. It's taken years, but nothing shows up. Neurologist tried to link symptoms to an event, but what comes first, chicken or the egg. Stress doesn't help, but it is stressful having FND. I really appreciate all your help. Take care. Moni

[Resiliant]

Hi Moni, I am so sorry to hear how you have been treated...I just found out that because my illness has shown up as "medical" and not in line with what the psychologist hoped? there is no plan no help & I have been signed off. She was actually angry when we tracked symptoms & they mostly happened in sleep & had no emotional connection. She acknowledged it was completely medical but in the same breath told me there was no help because of this... I find this bizarre and so upsetting, so I lost 2 years of my life choking, falling, having concussions, scalding myself & dropping things just to be told what I already knew.... whatever I have is physical... The stress of that last conversation nearly caused me to break down but I figured I am living with whatever this is for 3 years now (on top of cardiac, spinal, migranal & other medical issues) so really what is the difference. So I am taking care of myself as best I can. I hope knowing you are not alone helps. Your post helped me greatly tonight, as I sit in house with Covid as well as all the rest... I applaud your determination & I think it is our strength that brings us thru... Good luck & I will be thinking of you...Carol

[MONIREN in reply to Resiliant]

I'm sorry you had to deal with that on top of your health problems. I haven't had nastiness, just indifference, disbelief that I can't control the jerking. I liken it to trying to stop blinking, you can stare for a while, then you have to blink. With there being so many different aspects to FND, we can't be put in a box that makes sense to their over developed brains. I'm sorry you have the more serious aspects of it, I still can manage, just getting harder. Thinking of you. Love your handle. Resiliant. Take care. Moni

[Resiliant]

Thanks Moni,It is so helpful to have support of people who know what it is like. I am sorry you are being dismissed, especially re tremors. I always find it is that attitude that is the hardest, pain etc is a known quantity but being put down really makes it harder to stay up... I really find your words a comfort! Handle I thought was appropriate!!! (Sense of humour is still intact)...have a safe & peaceful day.

[maeveblue]

I am sorry to hear you are experiencing the dismissal which comes with FND. I would strongly suggest, from my personal experience, that you consider again working with a psychologist. The model of therapy they use is less important than forming a strong therapeutic relationship. Doing therapy has made a considerable difference for me with learning to be more compassionate with myself. Unfortunately for many of us with FND there are boxes we would like to keep closed from the past however these boxes will open themselves up if we refuse to look at them and cause new FND symptoms and make things worse. Telehealth will be accessible being in regional Australia and on a mental health plan from the GP plus being on the pension the sessions will be significantly subsidised too.

[MONIREN in reply to maeveblue]

Thank you for your suggestion. Will give it some thought. Take care. Moni