jill

[giltnane]

hi I have just been diagnosed with fnd and have mixed emotional can any one shed some light on professional help as currently I am not sure I can get the rehabilitation programme recommended. feel in limbo.

[Danslatete]

Take a deep breath and try to put things into perspective,

You have a diagnosis, probably not the one you were expecting, but it is still a step in the right direction.

Get your self some psychological help, take the meds, let them take the tests to rule out other conditions and if I were you get yourself a diary. Everyday write a Lind or two, how's your day been? Where have you been, what hav you done? At the end of each day find a single positive thing that happened that day, like first snowfall, of seeing a squirrel or smelling the sea. Something not connected to your pain. It does help down the line to see these things.

Make sure you ask questions, write them down and get the doctored to give the answers, maybe write it for you if they will. Not that most would.

Read! Get yourself on neuro symptoms .org and see what others are going thru, you will not feel so alone.

How does it affect you?

[skifast]

Yes Jill it is very overwhelming. My best advice is to do as much meditation physical activity and whole food Mediterranean type diet. For 6 yrs I was undiagnosed. I am looking vision in ways beyond control. Everything that has happened in body has moved it's way up my spine to th brain stem. My body is like a lazyboy recliner that is vibrating. 24/7 365. Now my eyes nerves vibrate and so does the vision. Check out FND hope.org. THE HIDDEN WORLD OF FND. Ciao

[giltnane in reply to skifast]

THANKS SKIFAST UNFORTUNATLY I'M GLUTON , WHEAT AND DAIRY INTOLARANCE AND MANY OTHER FOODS. I HAVE ng FEEDING TUBE WHICH I GET 800 COLOURS A DAY. THANKS FOR YOU SUUPPORT I THINK THAT NOT HAVING THE ABILITY TO CONTROL YOUR BODY IS SO HARD. I TELL IT EVERY DAY TO BEHAVE, AND PUSH MY SELF I FIND MY CONDITION WORSENED GRADULY OVER THE LAST FIVE YEARS. IN SOME WAYS I THING IT IS HARDER FOR THOE AROUND YOU AS THEY FEEL HELPESS AND TO SEE SOMW ONE YOU CARE FOR IN PAIN AND NOT KNOW HOW TO HELP IS VERY DIFFICULT. MY DAUGHTER IS NOW 11 AND WANTS TO TAKE MY PICTURE WHICH I HATE SINCE I'VE LOST SO MUCH WEIGHT AND NOT VERY ATTRATIVE TO HAVE A NG TUBE BUT FOR HER TO SAY SJE CAN'T REAMAMBER ME BEFORE HAND IS SO UPSETTING

[skifast]

Jill my heartgoes out to you and family! I fear the same predicament w/ tube is not to far off. My ability to swallow varies on a daily basis along with hunger. Being an athlete I fight everyday like yourself, in a frustrating position. Today I go for pt/ot evaluation,should be interesting. Ciao'

[giltnane in reply to skifast]

hi Skifast how do you cope are you able to eat much you can be peg fed have they discussed that with you their is more support in the community with peg then ng tube. what is your diet like. the ng isn't great but does give the nutrients I need but 20 hours a day. the back pack is heavy but I've had it since 2012 so I'm use to it. still get people stare but I just pretend they aren't looking at me. take care jill

[skifast]

What my diet is like is high in good fats low processed foods proteins veggies fruits. Try to use exercise to create hunger to eat. Going to softer foods but just dont want to eat all the time. sometimes 4-5 x's a day small snacks.

[giltnane]

how does FND affect you other then your swallowing? I know how frightening it is to have difficult I battle every day to eat . I really use to love my food but now it's a mean to survive. I have such a limit range of food, that I can eat without causing pain or allergic reaction. so eating socially is a no no. I never eat with the family or friends my diet other then feed is either scrambled eggs, or poached with genius bread or selection of fruit which takes forever to cut as I have it really small encase I chock . food often get stuck in my throat does that happen to you? eating should be a pleasure but sound like for us it's a necessary evil.

[KathyLynn]

I was just diagnosed with it today and my neurologist can't even answer my questions or provide me with info except stop working and stop driving...I feel your frustration because I have been crying all afternoon

[giltnane in reply to KathyLynn]

DEAR Kathy I AM SO SORRY TO HERE HOW LOW YOU ARE FEELING . I FULLY ANDERSTAND AND IT'S NORMAL TO FEEL LIKE THAT. FND IS A COMPLICATED CONDITION AND MANY DOCTORS AND PROFESSTIONALS DO NOT UNDERSTAND OR RECONISE IT. HAVE YOU JOINED THE FND GROUP ? IT IS VERY GOOD AND PEOPLE ARE HELPFULAND KIND OFFERING HELP AND ADVICE EVEN SOME A KIND WORD. I FELT BETTER KNOWING THAT I WAS NOT THE ONLY ONE. GOOGLE AND LOOK UP INFORMATION IT VERY INTERESTING THERE ARE MANY SITS YOU CAN GAIN USEFUL INFORMATION. fnd IS VERY LONLEWY AND DEBILATATING AND NERY INDIVIDUAL OUR SYMPTOMS ARE VERY VARIED WHICH MAKES DO DIFFICULT TO DIAGNOSE. TAKE EACH DAY AT A TIME I CRY ALOT TOO SOME DAYS. TORRORROW WILL BE BETTER . TAKE CARE jILL X