Living the life

[Ratchet1964]

Hi,my name is Paul, I was diagnosed around 12 years ago, it effected my lower half of my body, but n the last few months it's started to effect my arms, I have never been on any site's that offer help or advice before, so this is all new to me. When I was first diagnosed I was told, well you have a hair get used to it, and it probably will progress. At the moment I am scared what happens next. So any advice would be appreciated. So hi everyone, help.

Paul

[Ccaldwell]

Hi Paul. I am sorry that you are having new symptoms. It sure can be scary! I have just been diagnosed 6 months ago and I am still trying to figure this all out as well. I was told that I had Narcolepsy for years and none of the standard pharmaceuticals helped. I turned to a Naturopathic Doctor and use homeopathic remedies, and Accupunture for some relief. I have had to find my own medical help. I have to be my own advocate and do my own research.

I have changed my diet to the equivalent of a Vegan Ketogenic diet. It seems to help my digestive issues, and help me be more alert and have less brain fog. I began Yoga (when I am not paralyzed). The MOST help for me has been in using Meditation. It sounds airy-fairy, I know. I resisted a long time! I started using the Headspace app on my cell phone. It is free to start out. I have also found some 21-day meditation sessions for free on the chopra center website (you have to subscribe, and they are occasional offered). I find that the meditation helps me with the stress from dealing with this condition.

With all of that said, my most important advice I would have is not to let the medical personnel chalk everything up to FND. If you feel that this new symptom does not quite fit, get another opinion. Try something different. Keep asking for the help you need.

I am not an expert, as I am newly diagnosed, but I know from being more than 30 years without a clear diagnosis and constantly morphing symptoms that you must advocate for yourself and not just put yourself in the hands of the medical world trustingly. I always try to remember that these people are just human and are making the best guess based on their experience. If they have no experience of your set of symptoms, they cannot accurately assist you.

I have less really bad days. I feel less like a victim. I feel stronger to be able to advocate for myself with the medical people I have to deal with. I am better able to ask for the help I need without feeling like a burden and inconvenience to everyone.

[cathys20]

Welcome Paul, First of all it is not a hair it is a medical malfunction. Functional neurological disorder. Or FMD functional movement disorder. Functional simply means they do not know the cause of it, its not MS, Parkinsons, or whatever. Fibromyalgia is a functional disorder. Dystonia which I have can be called a functional disorder, It is very real and yes I would say it does progress, leading me and many others to believe something is causing it to advance as time goes by.

I have had this near 20 years now, I am formally diagnosed with dystonia, Sjogrens Disease, vitamin B deficient and periferal neuropathy. But....I have exactly what everyone else on this board has. A little of somethings, and a lot of many others. This last year has been the most challenging since the first two years. Health has been in constant decline. I have had 3 trips to Mayo and flunked almost every test they gave me. In the end the Dr. said I have an undiagnosed neurological disorder. Very real, very debilitating, but unknown the cause. To put it simply our brains misfire..And to date they do not know why.

Please take some time to read the posts of others on here, you will find comfort and hope in the stories you read, most importantly we are here for each other. God BLess, pray today is a great Lords Day to you and all on this board. Cathy