mrs Gillian Giltnane

[giltnane]

can anyone help and shed some light on where I go from here since I have BEEN DIGNOSED WITH FND AND HOW HAVING THIS DIGNOSES WILL AFFECT MY LIFE BEING DIGNOSED.

[cathys20]

Good Morning, Please take some time to read other posts and get to know the stories behind some of us, what we experience, and how and how not life has changed. Also, woud you tell us a little more about yourself and your symptoms. Glad you found this site, their are many of us, and it is a very safe place to post and be accepted. Pray this day is a good day for you. God Bless, Cathy

[giltnane in reply to cathys20]

hi Cathy I have been diagnosed in January 2012 with pan GI dismotility means that I am ng fed 20 hrs.' a day . I can it minimal but not to sustain me. I'm gluten , wheat and dairy intolerance along with cabbage, meat difficult to swallow, can't eat any fruit with a stone, etc. hands in fix deformed only thumb and forefinger useable on both hands, no voice, poor balance, left leg drops, non epileptic attacks, dizziness tired tingling loss of sensation headaches and deep aches across the whole body. what about yourself what are your symptoms? did you go on a rehabilitation programme?

[cathys20 in reply to giltnane]

Hi again, Have they tried any medications with You for some of these symptoms? I don't have time right this minute to write as I have a Dr. appt. shortly. Please take some time to read some other of my posts, they will tell you a little about me and about what meds I take. When I get home if able will write again to give you a little back ground of my situation. Also wondering if some things happened with you health wise before the symptoms started, infection, sugery, accident? When did the symptoms begin? Did they all come at once or gradual? look forward to speaking again and hearing back from you. God BLess, Cathy

[giltnane in reply to cathys20]

hi Cathy good luck with your Dr. apt hope all goes well.

I will read previous post once I have managed to work our how to get them think I'll need my son's expertise not very pc. have not really been much seams to be unable to take most meds. Allergic reactions to all tried as yet. my condition I feel started with just losing my balance 2009, and then a fall 2010 was given Diclofenac which I was allergic which started pain in stomach and chest which caused serious weight loss finally 2012 after losing 4 + stone was diagnoses with pan GI dismotility and have been on NG feed since. pain and tingling occur had bell palsy, after muscle biopsy left dropped and still does and I can't walk unless I hold on with furniture walls etc. he house still or wheelchair or scooter when out. hand started after operation on trapped nerve in elbow then croak voice coming and going now no voice since February. fee a right mess bodily wish I could go and buy a new one!! I'm sure many people say that/. x take care Jill

[VivienneWaterworth]

Welcome to this dysfunctional family. You will find a wealth of info at neurosymptoms.org and fndhope.org . If you are on Facebook, look for one of the FND Facebook groups. There are several. The main one is quite large and is good to start with, to get info from others, but the smaller ones help you to get to know other people better, and to understand how they cope on a day by day basis.

As for treatment, there are some rehab type things being offered in the UK and virtually nothing in the US...yet, though there should be within a year or so.

There are specialists called Functional Neurologists in some parts of the world (e.g. Australia, where I'm from). They test your brain to find which parts over-work and which parts seem to have shut down. They then design specific exercises for you to tone down the over-active parts (usually the areas of the brain to do with emotions...why? we don't know, but it causes a lot of tears for some of us), and also exercises to increase the activity in the areas that appear to have shut down or aren't working according to their original spec. The exercises are simple things like listening to a certain type of music in the right or left ear, squeezing a sponge ball in the right or left hand, throwing and/or catching a ball with one hand, that sort of thing. Very simple, very easy to do. I have heard from one lady who's husband is so much better and all his seizures went away after this kind of treatment. Unfortunately I can't afford it.

Meditation works for some people but not others, Mindfulness Exercises work for some, not others, EFT (Emotional Freedom Technique) works for me, so long as I remember to do it every day. Physio, OT, Psychological assistance/medication are more traditional methods of treating FND.

Some people find that certain common meds make them worse while others find the same meds make them a lot better. Everyone seems to react differently.

Many people have found a gluten free diet helps. Many have found Vitamin B12 supplementation really helps, even if their blood tests come back in the lower half of the so-called 'normal' range. Some find that Magnesium helps to feed their muscles so they aren't so dead-tired all the time, and also to stop the cramps and spasms, or to help the muscles heal faster after having cramps and spasms and seizures. I personally take 3-8 (yes, EIGHT!) huge Magnesium tablets a day to prevent cramps and spasms.

My doctor told me to keep increasing the dose until I got diarrhoea, at which point to drop back to 1 tablet less. I have read that 1/3 healthy people have a serious magnesium deficiency, due to the depletion of the soil and/or problems with absorbing either Magnesium and/or Calcium (my problem is mal-absorption of Calcium, leaving too much in my blood even though I have osteoporosis, and creating a serious imbalance, so that I require huge amounts of Magnesium to keep them in balance).

So there are some things you can do to help yourself. Find out what works, what helps, what hinders. I get seizures and massive cramps from SSRIs and SNRIs, and yet I NEED the Serotonin found in those tablets.

Anyway, all the best as you search for help.