Any advice?: I have been having a lot... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Any advice?

silverbeatl profile image
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I have been having a lot of memory issues especially names and faces, coming up with the right word, problems processing information, and problems with normal everyday tasks. For example, I tried to put my cellphone in the dishwasher instead of the coffee mug. I also got confused and tried to put something away in the pantry that belonged in the fridge. I've also been having a lot of pain in my hands, knees, and balls of my feet. Lastly, I have inflammation on my scalp and psoriasis on my nails. One of my blood tests showed that I had high iron level. I'm tired a lot.

I had a blackout and severe headache this summer and almost passed out. Thought I might have had a stroke or something. I've also hit my head a few times over the years. Neurologist said that she thought that depression was causing my memory problems and prescribed me Lexapro. MRI came back clear and Dr told me that she thought I "looked fine" and ruled out neurological causes/problems. She told me I should increase the Lexapro and follow up with a psychiatrist. I don't feel fine and am scared about all the difficulties I'm having especially at my age which is 35. I am so tired of living like this and I feel like giving up. Any suggestions would be welcome.

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silverbeatl
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sharynwalker profile image
sharynwalker

I have memory loss too l start to do lumosity brain training it has been great it helps it on the net try it .

piggy0704 profile image
piggy0704

My neurologist prescibed modafinil, it is used for narcolepsy, but the side effect of it is that it helps speed up neuro receptors in the brain, so it helps with poor concentration and the feeling that you are losing your words. I noticed a huge difference when I take it. It does not help with pain, but at least I can remeber peoples names.

silverbeatl profile image
silverbeatl in reply to piggy0704

What did your neurologist say was causing your problem? Diagnosis?

kmvalade profile image
kmvalade

I was diagnosed in November with FND. I've had several brain injuries over the years and even though i'm 56 now it's not due to getting older. I have the same issues you mentioned, including depression. I'm actually disabled because of it. I've become a recluse because it's difficult to carry on conversations with people because I always lose my train of thought, or can't find the right words. It's embarrassing. I also "lost" stuff in the beginning. putting things in odd places (and still do). I lost my career in computers (which I was in for 30 years) because I couldn't connect the dots any more. In my research I've found that a lot of neurologists aren't familiar with FND. My doctor said that mine wasn't "organic" meaning not caused by a tumor and such. It was from the brain injuries. I did several hours of tests before she determined this. I never had an MRI. The tests identify your level of ability in several areas. I would get those tests done. She prescribed seeing an occupational therapist (to help come up with strategies of doing daily things) and a speech therapist (to help with word finding, recognition, memory etc.). These things have been helpful.

There was a time that I just wanted to die because it was so difficult. It felt like I was a baby again and having to learn things all over. I carried a pad and pen to write important things down. I've recently gotten a smart phone and it is wonderful. I can talk into it and set reminders, notes, calendar for appointments. Sometimes I still lose my thought because when I have it I reach for my phone and in just doing that I forget what I was going to say. I've learned to be kind to myself in those moments instead of berating and feeling frustrated. I tell myself that if it was important it will come back again. and it usually does.

I have learned to put things in the same place (and I panic still if I forget to do that and can't find it) luminosity is a good option for stimulating the brain. I also play trivia crack for another stimulation for my brain.

I feel your pain. I'm not on any medications for it. I've learned that I just have to research it and develop my own strategies. I made a list of the things that I could do to help (because if I didn't i'd forget) I still forget what day it is and and the date. people's names and so on. I would offer that you try to take baby steps. you've already come up with several things you are struggling with...try to think of ways that would help each situation and write it on a list to review until it becomes a habit. For the longest time I wrote things on sticky notes and put them all over my house so that it would remind me. I've learned to do things immediately when I have something come up and I don't want to forget it. because if I don't I will surely be frustrated because I forgot. It's a new life and you've got to find ways to work with it. there will be good days and bad days but it does get easier if you come up with strategies.

I would find a neurologist that will do the tests (not MRI or medical stuff) just regular tests like being told stories and then having to answer questions about it, lists with lots of words and trying to repeat as many as possible....same things with pictures. they show you a lot and then you have to try and remember as many as possible. These tests will tell you that areas you are weak in and then they can offer different therapies for it.

I wish you the best in this journey.

silverbeatl profile image
silverbeatl in reply to kmvalade

Thank you for your support and encouragement. I do wish I were dead because life feels too hard. Everything is a challenge. I'm so tired of people telling me to "quit my bitching" and telling me stories of people who have it worse to change my attitude. Obviously they have never dealt with what I am. So I feel like they aren't qualified to tell me how to feel. It is refreshing to have someone tell me that they can relate to how I feel and that it is ok to feel my feelings. I'm angry and frustrated because people think my difficulties are funny or they get angry at me when I can't remember something they told me and call me a ditz. People can be so hateful. Honestly if I could trade my life with someone else who had a normal brain I would. Even if it meant I had no home or no legs because at least then I could still think right. thank you for giving me a little boost because I feel close to giving up.

kmvalade profile image
kmvalade in reply to silverbeatl

I hold you in my thoughts. Please find that place inside of you that keeps you tough. I do understand. My family was getting upset with me because they think i'm faking it to get sympathy...that just increases my feeling upset.(since I went to the neurologist and gotten the occupational and speech therapy, they believe me now) there is a book out there that I use called brain injury survival guide (I got it at amazon and barnes and noble..i bought several after reading it to give to the people closest to me.) When you call a neurologist to get tested make sure they know and understand what FND is.

Kat

geordie-girl profile image
geordie-girl

Sorry you are having so many symptons and not getting anywhere, keep going back to the doctors and inasist that you do not feel right, Or see a different doctor in the pratice. You could see a diffeent Neurologist for a second oppinion. hope this helps you. I am here if you woould like to talk. Take care

silverbeatl profile image
silverbeatl in reply to geordie-girl

Thank you. I appreciate the support

Skysunshine profile image
Skysunshine

don't give up. I started at 38 New 54'. For the most part I finally believe the depression diagnoses even though I find it difficult. Ihave had every test imaginable. I think I could light up N.Y. In the end they come up with a condition called Psuedodemtia. regardless of what it is called it is by all means demented. I had to quit work 2yrs ago could no longer do my job after 15 years of doing the same thing. can't remember names of objects. Replace words, ask the same question over and over again, can't comprehend, start sentences in the middle, can't follow a conversation the list goes on.Truly believe it is due to depression and stress.

fish92 profile image
fish92

i was a nurse for over 20 years, lost my job as was diagnosed with alzheimers over 4 years ago, had a PET scan before christmas as wasnt as bad as they thought i should be. now been told i have FND memory loss. My specialist who is a neurologist has discharged me and said to go see my GP. i did and he said its all in my mind and not a true illness and its a put on thing and under a umbrella that consultant give when they cannot find any reason. so he wont help me. i lost my job,career and husband. son can home to look after me, but is now angry with me and wasted his life on me and said there is nothing wrong with me. gave him the websites, but he says same. wasnt depressed, but now dont know where to turn. nobody wants to help me and feel i have just been dumped.

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