Newly diagnosed looking for advice

[Fireflygem]

Sorry if this is long in advance, starting from the being if suffered for years with gynolocial problems heavy periods, after having my second child diagnosed with polycystic ovary syndrome, had a dermoid cyst attach to outside wall then removed, had third child issues continued had fibroids, cysts and another Dermoid cyst was shrugged off few times before referred to specialist and had womb catarised, awaiting surgery to remove another Dermoid and look for endometriosis have been suffering from pain for a long time on and off since I was 13, I also have sciatica, turn in left leg and dislocated my knee three times and suffered anxiety and depression on and off currently medicated so that's history not sure if it relevant, so to now Saturday last week I suddenly hit the deck no warning walking, talking husband thought I fainted, but hit ground and was conscious in under 30sec didn't put arms out to save me we thought maybe was an imbalance like lack of salts, dehydration etc spent the rest of weekend sleeping on and off felt pretty rough had what I thought was start of migraine so took meds, slept and tried to stay hydrated. Again sorry long winded 😅 fast forward to Wednesday went for breakfast with husband in town as first day our children went back to, decided to go for a walk in town suddenly felt tired even though slept all night, even had early night couldn't stop yawning, had to sit on a few benches as felt like something had sucked the energy out of me, managed to get walking again went in to Waterstones then felt like I was having a panic attack and disoriented so ran out of shop sat on the bench infront of the shop and put my head between knees trying to slow breathing, took inhaler thought maybe asthma attack. Chest got tighter with pain, felt like I couldn't breathe, legs felt like jelly and left side starting with face going numb, to say I was terrified was probably an understatement oh forgot to mention they diagnosed me with bells palsy which looking back might of been a wrong diagnosis. So husband rushes me to aae unceremoniously dumped in a wheelchair handed a mask but couldn't talk was lucky if I couldn't string to words together without swallowing and due to covid my husband was turned away, I had to use my phone to explain what happened. Also had pain in neck and shoulder, followed by migraine similar pain especially when I tried to talk as the kept asking my name, date of birth and for a verbal explanation which was confusing and distressing. Spent next 3 days in mau unit leeched,CT scanned, x-rayed my neck and shoulder spent most time asleep managing about bursts of being awake half an hour to hour tops had regular obs, knocking my joints with hammer, follow my finger, push pull squeeze etc, had MRI so waited rest of day three to be told you have functional neurological disorders here's a website bye, so sat reading up on what was actually wrong with me at this point I can just about string 3-4 words between swallowing keeps feeling like my tongue is to big for my mouth. Had to get nurses attention to get doctor back for me downloaded a text to speech app so I could ask doctor questions was met with a resounding we don't know, see your GP in 2 weeks unless you can't breathe again then come to aae. I just started work for an agency in schools explained if I dropped on a child I'd never forgive myself, I just finished my degree decided to get surgery for cyst removed first before doing pgce but thinking this might be the end of my teaching career as everything has been turned upside down, any advice for a newly diagnosed FND would be great felt like they gave me my diagnosis and pushed me out the door for my bed, don't get me wrong I'm happy to be home I'm just a bit in the dark other than what I read and it's upsetting for my son as he finds it hard to understand me husband says I sound like I'm yawn talking or talking with my mouth full of food, also seems worse on my left I know it's long winded and I apologize again any advice would be great thank you in advance Gemma

[MONIREN]

I'm so sorry for what you are going through. It seems a very fast diagnosis, beginning to wonder if maybe FND diagnosis used to get you out of hospital. Hopefully you have a good gp that can maybe do follow up tests. Hang in there. I know its easier said than done, try to keep calm.

[Fireflygem in reply to MONIREN]

Thank you for reply, I hope not as I hate being fobbed off had to ask for a second opinion and put in complaint with gyney because he tried to tell me nothing was wrong when it was and his bedside manner was horrid made me read out my name on my scan and date like I was a child, don't know if I have the energy to do that again, baby steps I guess I'd settle for talking a full sentence without the need to swallow or sound like mouth is full of food 😔

[LouBL0u]

Hi

I really feel for you - it souvery similar to me - excuse typing bit like speech comes and goes, I have gynae history similar, I have spine curvature, I suffered migraines, my tongue swells etc But I am/was a teacher too!! I was a specialist in Early Years in SEND advisor role. Anyways had a fall in the garden almost two years ago, unconscious for 20 mins, CT, X Ray, MRI etc

I became my own expert reserched myslef, got POst concussion syndrome, all executive functions affected, couldn't even chant 1-10 so scary. So did myself a support plan, re familarised myself with counting by visualising number line, pracrised talking by using key words and gesture with hubby and children (grown up ones!) moved onto key words with one other no conjunctives for months...

Sawa neuro identified FND researched loads, got my GP to refer me to Rosa Burden in Bristol, spent 3 weeks as in patient and understood it all so much more... figured if the brain is plastic and signals can be re routed, create more pathways, so I work every day on tiny steps - scaffold my learning! Can now talk to family and friends, PACE myself and avoild stress. Teacher union very supportive had to take Medical retirement, brain couldn't cope with 12 hour days (you know what it's like!)

So, I think I'm trying to say, allow the emotions to happen, try and carve some quiet time for you and hound like you would for one of your little people to get the sertvice you deserve x

[Fireflygem in reply to LouBL0u]

Thank you, if I'm honest I've probably tried to rush and fix everything for my children resulting in ending up in aae again yesterday with chest pains, weakness down my left and speech went backwards. It's really kicked me that I feel I waisted my time getting my degree to help children and now I can't do that in school anymore or even my own. Another frustration is I keep getting phantom limb in my arm like it feels like it's not mine or it's not listening to me cause it freezes up, hand keeps clenching for no reason as well. Wish there was a magic pill cure but know it's going to be a marathon rather than a sprint 🙂

[LouBL0u in reply to Fireflygem]

Hi again

I do understand, I did my PGCE in my late thirties... It's a lot of hard work. Your emotional well being needs time and space. Something I wasn't able to get as a mum but got at the Rosa Burden Centre (for the first time ever i only had to think about me!! )

The main thing i took away with me from re-hab was some rationale from the Physio, I will try and explain it and apologies if this is not others experience.

The brain is normally in automatic mode, when we can't do something our brain focuses attention on it, which can result in brain in predictive mode. Creating a loop... Automatic-Attention-Predictive ....

So when my legs go, I was advised to stop, swing my hips side to side and walk and almost "click" into Automatic. Now my walk is 99% there. I used to lose my power and fall or curtsey walk!

Similarly I discovered if i was throwing and catching a ball against a wall I could produce more language, so I sang nursey rhymes while doing it. In the beginning I couldn't even re call them!!

My sequencing and processing were just not there, so I learned to make a cup of tea in small steps, i would sit on the sofa and repeat cup of tea, tell myself to stand, look at the door and walk to it, look at the kitchen door and walk to it, look at the kettle and walk to it. Small, excrutiating repetition of each single part of the process and now it's automatic again!!

I don't think I would have got this far without the support of a multi-disciplinary team at the Rosa Burden, but having time and space to myself for three weeks while there, having meals cooked, laying down to rest when you want, not being on "mum duty", to work on my symptoms was so valuable.

As someone said, once a teacher always a teacher and I congratulate you on that

[MONIREN in reply to LouBL0u]

That is explained so well. I have chronic back pain from childhood, brain sometimes gets wires crossed, even though I still have degenerated spine, I have been able to retrain my brain not to accept pain signals as often. Recently saw a neurosurgeon about another problem, he was interested in operating on my lower back, I told him, hands off, I've had it for 40years, I've learnt to live with it. Bit how they use a mirror on people who have lost limbs. Takes time and it's hard, probably why I have FND. When I'm tired and stressed I'm worse. Its so encouraging to hear it can be lessened some what. I don't think even the specialists have all the answers. Its also hard when you are labeled, I struggle with that, I'm a person not the sickness. I've accepted my diagnosis, it allows me to learn how I can live with it, bit like my constant angina, I've been told to live with it.

[LouBL0u in reply to MONIREN]

Thanks It is so hard to judge what is a new normal as it can be quite fleeting for me. But I am confident I have made progress and learnt/accepted I can't do 12 hour work days, do the shopping on the waay home and cook tea. Before I beat myself up because i felt so useless for doing so little with so much effort - but now as a family If I cook tea we're all pleased and appreciate it because a year ago I couldn't...