It’s hard to accept FND

[Westie_1]

Hi All firstly I wanted to say that I think each and everyone of you are brave to discuss how you feel ? I can’t seem to accept that I have FND my first neurologist in February said I had small vessel ischemia on the right side of my brain but he got ill and left?! The second neurologist said I have non specific deep white matter didn’t explain anything to me and said that it’s FND and I need to see a psychiatrist? I have no control of the left side of my face I’m struggling to swallow and my left side is weaker than my right? Does anyone think I need a second opinion?! Thank you all for your support love to you all going through this ❤️

[Van604]

Hello Westie. Did your first neurologist do an MRI to diagnose ischemia? If so, did the second one look at it?

[Westie_1 in reply to Van604]

Hi Van thank you for replying to me😊I actually had an mri the year before in may 2019 because I was having headaches and the facial spasms but when they looked at the mri in may 2019 they said it was fine.... The neurologist in February 2020 showed me that it wasn’t and highlighted the ischemia on the right side of my brain although problems spasms etc on the left side of my face . The neurologist that took his place said it’s nothing to worry about everybody in my age group has some form of it ? But when I looked it up it was 3% have it in my age group!! I honestly don’t know what going on or who to believe... I even spoke to the counselling team the last neurologist recommended and they told me to get a second opinion before I can even accept FND?

[Van604 in reply to Westie_1]

In that case, I would definitely see someone else. Preferably someone who specializes in strokes because they would know best about the ischemia. It looks to me like FND has become a fashionable diagnosis now and a lot of people are being diagnosed without proper examination and testing. FND experts themselves are insisting that it shouldn't be a diagnosis of exclusion and that there are clear and definite signs and symptoms. Best of luck.

[Westie_1 in reply to Van604]

Thank you for your response Van I honestly felt that I was making stuff up not being believed but if I have letters to prove otherwise I just want someone to sit my down and explain what small vessel ischemia is and also what non specific deep white matter means ... Then I can get on with my life X The only problem I have with the second opinion is I will have to go to same hospital... Not much choice where I live... I’m grateful that you responded to me I hope you are well yourself X take care and thank you 🙏 😊

[Bailey09]

Hi , I would definitely have a second opinion everyone is entitled to one I only seen my neurologist once I had MRI blood tests apparently they came back ok , then I was passed on to someone else and so on but everyone who seen me though I had a stroke, I couldn't move my right arm or right leg they just said it was FND at the time I was grateful for a diagnosis but I'm no better if anything I'm worse so I'm going to ask for a second opinion, take care good luck and stay safe 💙 keep positive 🤗

[Westie_1 in reply to Bailey09]

Hi Bailey i just think what we’ve been through is enough for anyone to deal with and I am totally frustrated that they just said FND and did I have a bad or traumatic childhood etc.with only having mri and ct scan no blood work or anything else? .. And was I feeling down!! Lol 😂 How are we supposed to cope ? Plus if you had been told you’ve had a stroke how does it change to FND? When we really don’t know what we’ve actually got? Plus like you it’s scary when you can’t move parts of your own body or they move on their own!! I’m getting no better either and if I’m tired it starts getting worse😔I hope you get your second opinion I wish you good health x you take care too and I’m trying so hard to stay positive... Good job I’m mentally strong 😊X You stay strong too ❤️

[Daesin]

If you don't feel comfortable with this diagnosis then get a second opinion...... don't accept it it until you are comfortable with it. They will tell you that one of the symptoms of fnd is denial by the patient.

You have to be your best advocate. If it doesn't feel right have someone else look at it. Best of luck to you.

Blessings to all.

[Westie_1]

Thank you Daesin I can’t accept it yet and you are right .. I’m just hoping they let me have a second opinion x Take care of yourself and thank you for your reply to me ❤️

[eviedotty]

I have 3 cavernomas in my brain one bled with a significant bleed and thats called a hemorrhagic stroke which shows up on an MRI scan and I spent 5 days on a stroke ward with all the therapy's you would get from a stroke etcNow I meet with the neurosurgeon Team and they want to consider removing the cavernoma that caused the stroke as it could go again and cause even more problems than before

I then go to the neurology team and they say the stroke is nothing not even a medical emergency blah blah...I lost my crap with him as he has come away with some nonsense in the past but this was just a step too far....outcome He apologized but still when I was sent back to him to discus brain surgery he just threw his toys out the pram big style ...petted lip the whole thing it was pathetic to sit through quite frankly.... then just to put the cherry on the cake this cavernoma that requires surgery is FND....I am at stage 3 in the complaints procedure...

[Westie_1 in reply to eviedotty]

OMG Eviedotty that is horrendous how you have been treated!! They should treat you with the respect you deserve you did not ask to be in this position!! I hope you go all the way to get your answers and to have the necessary treatment that you need so you hopefully will not have any more strokes!! Good luck with the whole process please stay strong and I’m sending you a big hug stay positive too X ❤️Some of these neurologists have a lot to answer for!!!

[eviedotty in reply to Westie_1]

Thank you for your kind words they are very much appreciated....heres the thing I have lived with this stuff for years, like more than 10 years and so have loads of coping strategies in place been to a CBT course got life style changes ....home adaptations etc to give me as much independence to live a good life and all was fine. I am aware that my body does not take well to the standard treatments for dystonia and in short of there is a life threatening side effects on the leaflet then it will come my way etc etc but I am so used to living like this that it really doesnt stress me....one bed bath in the hospital and my dignity left me that was enough to say no thanks let me sit on the shower seat and wash myself but apart from that its that old saying that you dont know how strong you really are until being strong is the only option and you get the strength from somewhere...but to be mis diagnosed has broken me and to have no one listen to me has broken me in a way these 'real' health issues never could and to be constantly forced or attempted to be forced into admitting some kind of drug miuse...at my age !!!! am in my 60s, in a wheelchair and housebound, like OMG...dystonia presents to one doctor as FND and to another doctor as a reaction to a drug taken and then to another doctor it is dystonia from an acquired brain injury and to another doctor its just dystonia and we have to get on with trying to manage things.

Dystonia can also be genetic from birth and a plus one to cerebral palsy and Parkinson's so the point being that there is a list of things that cause dystonia so why is it on the FND symptom list at all as it does not go away you learn to live with it and learning to handle stress and anxiety doesnt settle it down either it just stops it from getting worse,,,just cant see the thinking behind this

[Westie_1 in reply to eviedotty]

Eviedotty what you have had to put up with is awful and I do wish you had proper professionals listen to what you had to say as it is so frustrating when you know yourself that something is not right and you know exactly what your illness is X you are doing wonderful to go through this for so long and still come out the other side x It definitely isn’t FND that you have what an absolute disgrace to say that I just think these neuros are a bag of mix... just hope we get a decent one but it’s pot luck!! I agree with you I don’t understand their logic either X Please keep going as hard as it is and don’t feel broken feel strong I know it’s frustrating but you are not alone dealing with ignorance from these people X sending you loads of love take care of yourself and if you need to blow off some steam just let it all out .. I’m here to listen and I’m sure plenty of others will listen to you too ❤️

[Blackstorm69]

Hi Westie_1

I couldn't accept or I was told I was in denial that I had F.N.D.

It turns out I was right and I just had major 7hr surgery in October 2020 which I'm recovering from now.

Go with you're instinct and ask for another opinion. I wish I had done it sooner. Take care and I hope you get the answers you need.

[Westie_1 in reply to Blackstorm69]

Hi Blackstorm thank you for replying to me😊 Wow I hope that you are recovering well now especially after a 7 hour op is pretty major X I am definitely not backing down I’ve already been there before and listened to them in the past and they said I was fine in 2010 and it turned out I was right and unfortunately had melanoma but I’ve done well since getting that sorted in 2011... So you are right I’m not accepting FND until everything is ruled out first X We all know our own bodies best regardless of what opinions these medical people have!! They are not always right!! Although some of them are decent and good at what they do 😊Sending you a big hug and hope you will be ok X Stay strong and you take care of yourself too ❤️

[Blackstorm69 in reply to Westie_1]

Hi Westie_1

Thank-you so much xx

If its any help to you I found out that there was nothing in the scan to suggest I had fnd. I still don't understand why I got that diagnosis when there was no evidence to prove it. I accepted it and I wouldn't want anyone to go through the 10 month's I've had.

Ask questions about your scan etc. It is your right to know and a caring surgeon will explain to you and make you understand but until then you know you're own body and mind.

Wish you all the very best and take care. X

[Westie_1 in reply to Blackstorm69]

Thank you Blackstorm69 I am just hoping that I see a more experienced neurologist next time if they let me X This is so upsetting what I am reading on here about everyone’s situation and none are straightforward or none that I’ve seen yet?! That’s all’s I want is answers told to me in an honest way.. Thank you for wishing me well I sincerely hope you have a speedy recovery yourself and are on the road to better health and a better quality of life Xxx take care ❤️

[Van604]

Hi Westie. It's hard to get a straight answer because the experts can't even agree what to call it, let alone what it is and what causes it. Some still insist it's all psychological (behavioural) even though scans are now showing changes in the brain.

[Westie_1 in reply to Van604]

Hi Van I have noticed this because when I asked the last neurologist he skirted around all my questions. That’s when he mentioned did I have an abusive or neglected childhood? What type of response is that? All I asked him was do you think the small vessel ischemia could be causing my facial paralaysis and is this why I can’t swallow properly or open my eye and my speech goes and my weakness continues... he said I have no weakness on my left side ... both sides are the same ? He said my facial paralysis can disappear if I’m distracted? So I know he does not believe me so I’m still awaiting a second opinion decision my notes have been with another neurologist for 3 weeks.... so I just hope he looks at brain scans properlyX I hope you are feeling good today Van X I just don’t want to put up with this for years and I’ve only had problems with it since 2019... I’m exhausted.. but I am trying to cope better 😊

[Van604 in reply to Westie_1]

Unfortunately, they still have these old Freudian notions. They spent 2 years trying to figure out my psychological triggers, with no success. I'm hopeful though because some doctors/researchers are beginning to reject all that and look for physical causes. I think the picture will be very different in 5 years time - we just have to hang in there and refuse to be fobbed off in the meantime.

[Westie_1]

Thank you Van you are so wise and make so much sense I appreciate your honesty. Plus all what you’ve been through already you are further along the road than me. I definitely won’t be fobbed off and you are right I think they will think differently in time. I’ve started meditating hoping that may help? Take care Van sending you my appreciation for your wise words and some love because you deserve it X

[Van604 in reply to Westie_1]

You are very welcome. I'm lucky because I met a couple of other people with FND in Vancouver and we've formed a little support group via zoom. It's definitely kept me sane during the past year! What we find is that this isn't a one-size-fits-all thing. We have to figure out what helps us individually. So one woman loves knitting, while I prefer reading and massage. It's really whatever makes your brain feel happier!

[Westie_1]

Hi Van I love to read and the meditating is quite enjoyable 😊I’m glad you have a zoom group such a good idea and like you say one size definitely doesn’t fit all and if it helps you all that’s even better!! I’m not ready to zoom I’ve got to get used to my own face first!! And I can’t say I’m there yet😢But in time I will and may find a group over here In England... Got to get ready for work! You take care of yourself and each other sending you a group hug to you all in Vancouver X