Wish I could write something funny today. But it's pretty impossible. After being battered by 4 seizures yesterday (and generally 3 every day) I've already had one this morning followed by temporary leg paralysis. And my back still hasn't recovered from yesterday - and nope dear Drs a couple of Nurofen Express doesn't help. So just another 2 to look forward to today.
Am I awful, I feel so done in, I spent today's seizure thinking about Dignitas. Probably. But what life is this leaving me. Conditions just seem to be getting worse. But I don't put it all down to FND. I have an auto-immune disorder with my thyroid and have put on weight quick quickly over 2 weeks. I'm naturally skinny. My local GP Practice has a triage system - i.e. the doctor phones you back before you get a face to face appointment. The GP said, naw it's not your thyroid. Do you have any other symptoms rather than the weight gain? I said no, but then I never had any before - it was my GP who discovered it during a routine blood check (I moved so I lost her and she was brilliant). I asked him then that if it wasn't my thyroid playing up what could it be : he said more calories going in than out. WTF - did you really go to medical school? Did you buy your degree off the internet? I told him that I am naturally skinny, my diet hadn't changed and if I sat on my skinny arse doing nothing the most I would put on is 2lbs! He very reluctantly agreed to have my blood re-tested- gee thanks for nothing. I asked when that would happen - in 2 - 3 weeks. I'll be the size of an elephant by then!!
You'd think that something new would be interesting over children's sniffles, bad backs and some slight depression. NO. I think they'd be happy if I just went away, fell over and dropped dead.
Sorry again for the wallowing in self-pity and the rant.
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Hi Louyse, really see sorry to read what you're going through and the poor response you've had from your GP. It's hard to know how best to go about getting the help you need, and of course, you need it now!
Do you know that Prof Mark Edwards is taking questions in a webinar on 22nd May at 9 pm? Would it be worth while asking for his advice?
Have you seen a different neurologist recently for fresh eyes on your situation, maybe Dr Jon Stone-(if you live in Scotland?)
In my experience, I feel better knowing I have an upcoming appointment to pin some hope on. I hope things start to improve for you.
Thanks for the response. It’s always good to come to your FND family. Don’t know what I would do without it. I’m signed up for the Prof Edwards webinar - it’s always so difficult to get your question picked but they still are good. Cheers Lou
Good morning im really sorry to hear your going though this terrible time. im the opposite to you, Im naturally a big guy, never been thin and no it's not because I've got a season pass to Burger King. Have you been started on or taking gabapentin? As this drug, in high doses, can whack on wieght which it has done to me.
the doctors make you laugh, they say do more exercise, but most of us have a major issues with mobilty and fatigue so what do they expect.
i hope you get sorted soon and again im sorry your suffering
Hi thanks for taking the time out to reply. It helps. I was on gabapentin years ago but came off it because of the weight gain. I swear if I even look at the patient leaflet and it mentions weight gain I swell up 😂. I push myself to the gym- I’m a long distance road runner- refuse to say I was. I had got up to 8 miles on the treadmill in the gym (running clubs won’t have me because of my seizures- aren’t we a disability accepting society!) but that was before Christmas but things have worsened since then. But I’m determined to go back next week to the “shuffle machine” - my son nicknamed the treadmill that cause I’m going to be so slow 😂. Cheers Lou
Thanks for replying. It’s much appreciated. No I don’t but I’ve been recommended a specialist dietitian from a woman with cancer and she says it has helped her a lot. I’ve been thinking of going and more and more looking into homeopathic routes. Cheers Lou
I have found great improvement with using homeopathic routes as they treat the whole body. It is a gentle approach as well as healing. Refreshing actually! Wishing you all the best on your healing journey.
Whaddyamean 'nothing funny'. The image of a 'bony arse' facing up to a GP brought a smile.
I have the opposite problem. Gradually I have been losing weight since a chemical clash (previous meds a)d anaesthesetic) post-op ("routine" the numpties said) in Nov 2016.
No bu**er in the medical team seemed to have a handle on what it was that was causing the thrashing limbs. Seratonin syndrome they chanted as a vague mantra for a month (despite the fact that it either kills you or goes away after 72 hours). So I was cast to the wind and my own devices (no follow up, not even for the cancer, a neurologist who didn't/wouldn't diagnose me and then rather rudely backed away from treating me. He told my GP but not me.
THERE IS ALWAYS HOPE. FNDHope. Dot posted about Prof Edwards Q&A Session on the 22nd at 21:00. Please look on the website and listen in. I think that there's a means to ask the 'dumb but not so dumb question' in advance. Prof E is brilliant. A leader in the field. He is a lovely guy when you meet him face to face, friendly and compassionate. He is the dog's bo**ocks when it comes to functional stuff.
I talk too much.
You come across as a beautiful person who is wholly hacked off with the FND affair. You are not alone. Many of us have woken up to find that old mother nature has dealt us a bum hand. Skinny arse indeed!
Personal note. I have my good days. Yes it is possible. I also have my curl into a ball and quiver like a jellyfish in a seizure on the floor days. A bu**er isn't it? Dignitas is on the list. So are the Samaritans.
I will not go gentle into that good night. I will rage, rage against the dying of the light. Google Dylan Thomas if you don't know the whole beautiful, moving poem. (And others from the same source)
Lastly, a number of things have supported and carried me on. FND Hope, Prof E and Glenn Nielson in St George's, my wife (nominated for a Nobel prize for humanity in putting up with me these past 18 months.) Above these rides my Buddhist practice. Every day I chant to bring out my Buddha qualities of wisdom, courage and compassion.
Enough said. I will spill the beans on that one if you are interested. Can do this off line via messenger/fb etc.
Keep on. Right on. There's a well-known Buddhist quotation that is "The journey from Kamakura to Kyoto takes twelve days. If you travel for eleven but stop with one day remaining, how can you admire the moon over the capital?"
Please keep going. You have my (distant) support. Be sure.
So you are a fellow shuffler! Well there's something in common. Irritating isn't it.
Please take care. Enjoy the webinar. Carry on, get well if only to show the 10 minutes a consultation philosophy GPs that you are a whole, valuable and vibrant person, whose humour just leaps out of the replies that you have written.
Thanks. I really like that poem Rage against the night or something of that manner.
I am Irish- I can talk the hind legs of a donkey 😂. Even when my kids and husband say they are not listening I just keep going anyway. I talk the same way to my pets - I’m sure the hospital staff next to our back garden on their smoke break think I’m a raving loony.
Louyse you are the first person I have met that understands what its like, by October of last year I was having 3 to 4 seizures a day and It was probably my darkest time. It's a helpless feeling, You just aren't living at that point. All my symptoms were at their worst and it really took a toll on my emotions. Things were so bad that I'd end up at the ER just to be treated like a crazy person and sent home. All the doctors, neurologists they just couldn't help me and would say rude things, or blow me off. its enough to make a person feel crazy. After a lot of trial and error, the only things that have helped me manage my seizures is the Ketogenic diet and a THC/CBD oil combination. Since January I've had about 2 seizures a month and so many of my other symptoms (like headaches, fatigue, nausea) have subsided and even my weakness isn't as bad. If you ever want details send me a message. I really truly hope you can get out of that place of having multiple seizures a day and hang in there, don't let those awful doctors get you down. they don't know everything.
Hi Louise, I too like you have swelled. For over 2 years I was well below my normal weight 10 stone, I did go below 7 at one point due to side effects of different medications that never actually helped, 1 year ago I got to be assessed for inpatient program in London but they wanted me off diazepam and tramadol while I was waiting to go in. As soon as I’d stopped the diazepam I bloomed (outwards) its like my stomach muscles totally stopped working and gave up. 1 year on and I’ve blossomed more, my clothes no longer fit, I don’t have the money to replace them and struggle with the excess fat around my middle. Like you the dr said eat less and try to exercise more. Bearing in mind if I overdo stuff my seizures and symptoms will return with a vengeance. I’m now trying to diet on salads as warm weather and I enjoy salads. Without the exercise this is another long battle. I’ve never had to diet in my life but trying to explain to a dr that my excess weight gain was overnight from stopping diazepam goes nowhere. The uncomfortable and sometimes painful experience of this extra weight which gets cramps in when I try to bend is just another frustrating part of this illness of fnd. Totally get how you feel. Big hugs, (need them to get round my blubber)
I’m 5 foot 9 inches and normally weigh in at 9 stone 2 lbs, sometimes 9 Stone 4 lbs(if I have over indulged) I have put on 5.5 lbs in 2 weeks. I am not imagining it and I do think it is down to my hypothyroidism- paramedics always think I mean hyper when I say it but no it’s hypo. Now over the last 2 weeks I get a distended stomach - it is rock hard to the touch. I think I weighed less and looked thinner after my first trimester when pregnant with the kids 😱. I’m waiting for someone to ask me when it’s due 😂. And like you if I bend over or slump on the couch it hurts. Sometimes the only remedy despite taking Nurofen Express is to lie on the floor and make anti circular circles around my stomach. I hope l’ve got the anti circular bit right. It helps until the pain killers kick in. I’ve never had to diet in my life and diets just make your weight go up even further when you stop the diet. Blubber - na just winter storage like our ancestors. Thanks for replying - I do appreciate it. Doctors hey - they are always a second opinion as we are the first because we know our bodies. Cheers Lou 🍀
Also, I’m not sure if anyone else has this but I did notice when having many seizures they really affected my mood. They made me so depressed I ended up suicidal and had a mental health team to help. Lack of answers before diagnosis (17 months) and seizures everyday lasting many hours left me hanging on to my sanity by a thread. Touch wood my seizures have stopped since being in rehabilitation except for fleeting ones which they noticed in hospital, they are so quick, like a glitch before I reset and move again. It’s the big seizures that knocked my mood totally down. As long as I rest and don’t overdo anything they thought in hospital I can control the seizures, so far that has been correct BUT that leaves me struggling with that fine line between trying to improve but not overdo it. It’s definitely a long slow slog to improve even slightly.
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I feel my ship is sinking. 
feeling od drooping water on skin
Struggling with FND diagnosis 
Feeling Helpless, we’re is my life gone
