Hi all,
Long time no see. After waiting 7 years to see a neurologist, and having so many MS-like symptoms, my specialist announced I have FND. After just 30 minute appointment, he concluded all my pain and symptoms are “real” but not due to problems with the brain. Somehow I feel dissatisfied. My family suffers from hemiplegic migraine, TIAs, epilepsy and fibromyalgia, to name a few. One good outcome was that he wants me to have an MRI to be on the safe side.
My latest symptoms, include dragging left foot behind, half body numbness which resulted in an A & E trip, choking and swallowing problems, increasing numbness in my hands and arms, brain fog and feeling everyone is talking to fast ( can’t watch tv now ), feeling detached from my body… ( ive been bed ridden and wheelchair bound for 7 years now ).
My specialist even said he didn’t really need to see me again unless my scan shows something interesting. After reading up on FND, I have so many questions I want to ask him, and wish I could tell him more about my symptoms and seek advice.
I cant help but feel short changed. Have any of you had very brief appointments like I have , where the neurologist have managed to come to a conclusion so quickly.?
Hello
It must have infuriated you. I’m not surprised.
But, I suppose there are some signs apparent in a neurological exam that show whether MS is possible / probable?
At least he’s referred you for an MRI. And if there’s anything that shows he’s wrong in his hasty diagnosis of FND, you’ll be called in for another appointment.
FND is of course, just as valid a diagnosis as MS. The symptoms you have are still genuine symptoms. I’m not altogether sure who you are supposed to see with relation to an FND diagnosis. Surely there’s some help available?
I assume you’ve seen What Is FND - FND Hope International
Hopefully your MRI will be soon and equally, I hope you’ll be given the results from the MRI soon thereafter.
If you then still feel short changed and poorly treated, you could of course contact PALS (Patient Advice and Liaison Services). Your local hospital website should have the contact information.
Good luck.
Sue
Thank you sue for your kind words, and you are right. I need to focus on the positives. Roll on the MRI scan. I never expected MS or anything, just wanted confirmation I had hemiplegic migraine, that’s all ( because it’s in the family genes ) . And now I’m off down the FND route, it came as a surprise, especially being diagnosed so quickly. I’m hoping I can go on having help after this. But no, the only advice he gave me was to exercise more…and that’s not so easy since I’m bed ridden from many other illnesses. ( plus ive already tried hydro and physiotherapy. He pretty much said " you have FND, here’s the website you can look at,… goodbye… Lol. No chance to ask questions or take it in… Maybe being the NHS, they are hard pushed for time and money. I don’t blame them at all. I’m grateful I had an appointment to be honest with you.
I worked on a neurology ward for a few months and there was a patient with FND. Their treatment involved a combination of psychology and physiotherapy. I’m sure treatment is tailored to the individual, but that may be what to expect peacelily
This sounds like me although I have only had symptoms for a year and not as debilitating as yours. I’ve got various arthritis pain which has been worse recently. Any way it was my second neurologist and I wondered why I was seeing the top man but realised it was to be this difficult diagnosis only he called it Somatisation. He was so convincing I walked away on a high. I crashed the following day when I finally admitted to the depression I’m suffering. I know the trigger for my symptoms which haven’t stopped yet and now instead it’s causing my head to go into overdrive thinking about the psychological reasons for this. I want to scream but my husband won’t cope with that so I’m trying to be patient while help is organised and maybe one day I’ll scream and cry when I’m alone
I hope you get sorted coz I understand the living hell all these symptoms cause.
Lesley
Thanks peacelily, I will investigate this. Hopefully I can get some tailored treatment sooner rather than later.
Lesley, I was sad reading about your condition. But I totally understand how you feel. I’m also not sure how to cope with every thing without upsetting my husband. Inside I’m screaming, but outside, I’m trying to remain composed and calm.
But the sad thing is, that our repressed anger and frustrations are making our condition worst. We both need to scream and cry as loud as we want in order to let off steam and take the next step. And it shouldn’t have to be in private either.
There are times when my husband witnesses me “losing it”. One day, I smashed up a canvas, just because I can’t paint any more. My fists ended up black and swollen, but I felt so much better afterwards. Depression sucks, besides having FND.
Hi it’s funny you should say that because the other night when I couldn’t sleep my hand touched the wall and suddenly I wanted to smash a hole in it and smash my hand up but this strange sensible side of me jumps in and says don’t be stupid you couldn’t break it it’s a stone wall. Maybe the real issue is a damaged hand is visible and gets sympathy.
I couldn’t cry with my husband when my parents died at separate times 16 years apart so our relationship hasn’t changed much.
It’s going to be a long road and I’m prepared to start the trek, that’s how I feel today tomorrow may be a different story. Life sucks at times!
xx
Hi not posted before unsure if i even av ms been back and forth to hosiptal and doctors last 2 years. Fed up with it now. I am a 51 year old who gets tired all the time i get up and 2 hours ater so worn out just want to sleep pins and needles in arms hands feet legs and face sometimes numb and fuzzy feeling.even my bran feels fuzzy weird i went to see a specialist at guys and he saw me at my worst even talking was a stuggle my brain just switched off kept asking if i was back.in the room. Anyway i have damage to c2 c3 c4 c5 c6 c7 dic also lower back disc cant remember what ones. So my nero doctor sent me guys to see if my problems comes fromn this. They said no mybe a couple of signs but not all. So i was sent gor another mri 1 have had 5 this year they are not showing anyhing. My question really is do i need a contrast mri. Is it possible to have ms and not show on mri without contrast. Also my systoms settled down for a while but now there all back. Am i worried abut this and ms does not even apply to me. Just want to know were to go from here. I have asked for a second opinion but have too wait 6 months. And the first nero doctor said he does not want to ee me again. And the other hosiptal doctor is saying its nero related.
Hi chel67
Just read your post , sorry im late in replying… I wondered if you made any progress on your investigation in your neuro issues and managed to get a second opinion.? Would love to hear what happened…All i know is it can take many years before you get a solid answer and a definate diagnosis.