Little advise if you have any please friends.

[Keepstrong]

Hi Dear friends.

I hope your all enjoying your weekend and your not in to much discomfort. 🙏🙏🤗🤗

Friends I have a appointment with neuroligest. So would any of you have any questions I should ask her as to having tests done ?.

Back in May when I was hospitalised for the start of sleep depreveatuon Seizures and the wide spread pain and discomfort of this horrible NFD

The only tests she done to make her diagnosis was to look at the mri and the ct scan I had to have because I looked like I had a massive stroke. Thankfully it was a hemiplegia aura Migraine. But them 2 tests I was having done any way is all she done apart from monitoring my walk an a few blood tests. All was clear. I was to go back the following month to see her but she took 2 months holiday leave. So now I'm seeing her thus Tuesday and I'm gonna ask where is my eeg and other tests appointments?. So if you have any suggestions please let me know before Monday. I be so grateful for your support. Wishing you a very happy Sunday and sending out Healing hugs Comfort and light, 🙏🤗💐❤️👼😇

[DNE92 Moderator FND Hope UK]

Hi. Could ask to have your bloods checked. Some people find they are very low on vitamin B12 and I found out that my thyroid is knackered. I saw a post about a SPECT scan - think it looks at blood flow in the brain. Don't know if that's on offer in the UK. I'm thinking of asking about it. What about a sleep test - mine confirmed pre-FND sleep apnea but more interestingly that I have Perioic Limb Movement Disorder- I basically just move all night. Cheers.

[Keepstrong in reply to DNE92]

Hi Louyse. Thanks so much for your reply.

This is brilliant information to give my neuroligest to look at.

I have Hypothyroidism and sleep apnea.

8 have been so consinting on research of Neurological function and Fibromyalgia / Myalgia Encephalitis and also Sleep Apnea, that I actually never thought of research into thyroid and neurological function.

So thank you dear friend. 🤗🤗🤗

Also what you mentioned you have to do with involuntary twitching and muscles jerking. It's actually quite common in fibro myalgia. I have episodes of this but now it's 10 times worse a' poor Joe keeps waking up an awaking me thinking I'm in a seizure. 😔 Poor guy is living on his nerves due to it all. Some of my Seizures are changing to quite ones. I'm not making any sounds but my hole body goes into a complete spasm followed with massive jerking and eyes rolled completely back an Teath are grinding. This happens in a none silent one too only different is I do be growning.

I have had 3 in 12 hours yesterday an I'm not the best after it I must say.

My legs don't want to walk with the top half my body either before my sleep Seizures or after them and I end up being in the floor front the body always hitting the ground. 🙄🙄🙄😵😵

Soooo frustrating.

I'm lucky in the sense that my Seizures are only when I'm fast asleep never when I'm awake.

Thanks so much for amazing advice.

I'll let you know how I get on tomorrow.

Thanks again and I hope you are keeping well too?

Sending soft healing hugs with comfort and light your way and wishes for a pain-free day and week. Be well and keep strong. Ce. 🤗🤗🤗🙏👼😇

[DNE92 Moderator FND Hope UK in reply to Keepstrong]

Thanks. I've ordered a gravity blanket to see if that helps at night. Unfortunately I also take several prolonged whole body seizures per day. Either twisted or just look plain dead. Once had CPR done on me cause I looked that dead 😮. Quiet or twisted they sodding hurt. FND is so weird- I have hypothyroidism too yet I'm skinny 🙄. Good luck and keep pressing for your tests. Cheers Lou x

[Keepstrong in reply to DNE92]

😂😂😂 I too use to be skinny upto 4 years ago. But thanks to wonderful pain killer and steroids being pumped into me over the last few years I'm 3 stone over weight. 😵 All my Seizures are when I'm out cold fast asleep it's crazy an very frightening. I do wake up to Joe and my daughter calling me an rubbing my face an legs telling me to wake up an then I'm a wax work plastic dummy nit able to move or bend anything till at least a good 5 minutes or up to a few hours. I can only talk through my teeth as I can't open my Jaws and I have fractured 2 my Teath 2 months ago due to the Seizures and I have tennis elbow, bursitis and tendinitis in my right arm all due to the Seizures. No one can do anything about repair till the neuroligest. She went on holidays without keeping my appointment in june do now I have to till tomorrow to see her an fir her to send a permission letter to the dentist to remove the fracture Teath and for neurology physical therapist to work on the functions of my body that's no longer responding properly. 🙄🙄🙄 God knows how long it's going to take.

But there is much worse then me out there. So it's a matter of grinning and bearing it really. But definitely I'll use your suggestions too. Thanks again. 🤗🤗🤗🤗🤗