a newbe feeling lost

[chattywoman]

hi, i am a 59 year old woman, happily married with an ever expanding family (8 grandchildren). for the last 3 years i have been experiencing worsening symptoms, numbness, balance and bladder problems, brain fog, fatigue and pain. these are the main problems and seem to get worse by the day. i have given up work and my hubby is my carer, bless him. had all the tests relating to ms by my neurologist and he has come up with the dx of "medically unexplaind functional nerological symptoms". i have lots of meds a wonderful gp and am seeing a psycologist.

i found this site and i am hoping that this is the right place for support and to learn.

i have just come through a "relapse" which has left most of my face numb and the ability to walk a short distance even worse. i use a walker when i go out on which i can sit if i need to. i need someone with me when i go out, and i hate to keep asking for help so i am pretty bored and it does get me down.

people keep asking me whats wrong and not having a "proper dx" i feel like a fraud.

looking forward to any replies x x x

[kotovasv]

Hi, what you feel about being a "fraud" is a very common experience among FND patients. It is very difficult to come up with explanations of your condition, when even the medical science knows nothing about it. I advise you to read a website of the FND advocacy group, fndhope.org. There are basically all aspects of a FND patient life discussed there. In addition, please read the website neurosymptoms.org created by a world-known FND specialist Dr. Stone, it will help you with understanding your condition. As a bit of personal advice, I would encourage you to try to do things independently as much as possible. Say, go out with your walker on your own. You will feel much more confident when you see you can still do a lot, in spite of your symptoms.

[Usedtobefun]

Hi there, I had symptoms similar to yours and was diagnosed with Hemiplegic Migraine, I only get the head ache (well more of a base of my skull/neck ache) at the end of a cycle, then begin to recover and it starts all over again. It's tough going!

[Debs29]

Hi I am 49 and have also had to give up my job my husband is my carer I am in a very low mood at the moment I am in consent pain but I don't like to tell the family as they have their own problems/ life's to live. This morning I just burst out crying for no reason but fell I need to cry I do not see any medical people as I was just discharged 2012 and my psychologist left that Christmas after only a few months of me attending she said she could put me on a waiting list for some one to pick me up on their cases or discharge me and if I fell I need to speak to someone to go to my GP as she will write to him to inform him what has been said. Well it took all my strength to attend and agree to see her as I had a think about mental health being put to my name, I have looked for groups to attend to help me meet people but there is nothing around in my area. My medication is working at the moment but I know it can stop at any time.

Yesterday I was brushing my hair and found that I couldn't stop and then this morning I feel very tearful I don.t know what's going on but I don't like being out off control and not knowing what is round the corner. I feel that some thing bad is going to happen and I don't know what

[geordie-girl]

Hi I have just read your e-mail, and I know exactly how you feel. I have the same problems as you, I have to be with someone when I go out in my wheelchair. I slipped in the house and broke my back January 2011 and admitted to hospital thank goodness my back healed but it was then that they noticed a weakness that was not related to my back. I am in chronic pain which can hit anywhere without warning. After numerous tests that all came back negative I was diagnosed with FND. You are not alone and if you need someone to talk to I am always here for you. You are lucky to have a GP that understands your problem. I know it is sometimes very hard but try to remain positive and try to keep as active as possible. x

[saramck]

Hi guys I am 29 and just got dignosed on mon with fnd.ihave joined this page t try and get some positive feedback hopin this will help m recover from this.can I askwhat medication works best for u s.