Diagnosed... Now what?

[RachFND]

Hi, just diag with Functional Weakness, happens in limbs, joints and have also had 3 episodes of full stroke symptoms, even admitted to stroke ward in Jan for two days,. Not fun at 30 years old! The pain is enough to bring me to tears but as a single parent to two boys I just have to keep batting on. I'm awaiting another MRI to query a blood vessel that my neuro thinks is torn at the back of my brain.... But that's it... I have been told to look at some websites but NOTHING has been offered by way of a treatment plan. I have dealt with this pain and the "strokes" for over 6 months I thought once they found something I could start working at fixing it. Stopped drinking and smoking... Only did small amounts 2/3 times a month anyway... Tried to increase healthfoods and reduce junk foods. I feel like I've been thrown into orbit.... What happens next!? Any advice would be so so appreciated xxx

[BuntyP]

If you're in England insist on a referral to professor Mark Edwards at St George's Hospital in London. My best advice is to be kind to yourself, you didn't want this you didn't choose this it's bad luck that happened. Just because they don't know what causes it yet doesn't mean they won't find out. I looked at it as my life is lovely with great family and friends and the only bad thing is my health. Try and relax as much as you can because being tense is physically demanding and so is worrying about the future. Good luck xx

[RachFND in reply to BuntyP]

Thanks for your reply. On the first stroke episode I decided to leave my demanding "career" and do a part time job instead. Started paying for a cleaner too to maximise rest... If I'm honest I haven't had regular rest for 8 years... Since the boys arrived. I am trying to be kinder to me, as I said with reducing toxins and increasing healthier habits into my life. Struggling today, and sick with nerves about the next MRI... A torn blood vessel doesn't sound good so I hope she's wrong. Hard to stay relaxed, ordered some yoga dvd and started to reduce electronics at bedtime so I can properly shut off x

[pickleweed]

If you have cable TV or something equivalent, I recommend doing SLOW, gentle yoga at the level at which you are capable. From AT&T cable TV, I watch "Happy Yoga with Sarah Starr" for 2 30-minute episodes per day when I can. I've noticed that when I'm trying to do the yoga, my involuntary movements tend to decrease as if I'm in a trance. Seeing the yoga on a big TV helps. For education, you may want to do the $49 course from Frazier Rehab Institute:

louisville.edu/medicine/cme...

[RachFND in reply to pickleweed]

Thanks I will try this tomorrow, been meaning to try yoga for years... Now u have a push to do so x

[Lolastar]

Thats because most doctors dont know what to do. There isnt enough research on Movement disorders or functional disorders to inform them of what to do. Ive come across several doctors that dont even take the time to try to help they just push their cases onto psychiatrist or push meds down peoples throats. Talking to a therpist for frustration relief helps some. Physical therapy and occupational therapy help with too, but thats if the therapist understand what FND is. Many dont because tgere isnt enough information out there about treatments. We have to be our own advocates, do our own research and then share what weve learned and go through with therpists and doctors we come across. Keep a journal of symptoms, dates, times, moods, diet and so. Thats my experience with it anways.

[RachFND in reply to Lolastar]

Thanks for taking the time to reply. People keep mentioning head doctors etc, I really don't know if that will help, certainly have no childhood trauma, have a regular life, enough money to eat, nice home, wonderful kids. There's nothing in my life that fits the neuro docs thoughts that it's a psychological problem. Genuinely one the most relaxed, laid back happiest people I know, life is good for me. Apart from this.... This is the only thing that stresses me out... Maybe talking about this to someone as you've said will help. The GP hve given me a counsellors phone number... No idea what for... I've nothing to talk to them about... Except the fnd x

[frazzledmum]

Hi My daughter was diagnosed in September 2017 after 2 eisodes of complete paralysis and pain. They told her it was related to migraine. She works but has found that stress and tiredness can make her symptoms worse. Thats why they refer to psychologists and psychiatrists to help you deal with these situations to reduce attacks. She is determined but I wish sometimes that she would accet help but applying for PIP is not an option when assessors dont know what it is.

[RachFND in reply to frazzledmum]

Yes I too get get migraine but without the headache which is odd. It's been a big lifestyle change for me. Significantly dropping hours, no longer having responsibility at work and mentally relaxing over the housework... Allowing the kids to make mess and joining them and messing up myself. The last couple of weeks have helped. Yes the lack of pip is frustrating, I'm currently job searching whilst temping and employers are declining me for the simplest of jobs... Even tho I have 15 years corporate experience as a people and project manager... I'm convinced its because I am declaring my illness. Catch 22 x