Curiouser & curiouser (or feeling baffled by my FND journey)

[Kittilyn]

Hi there, I hope you're all doing well today.

I'm new here & I must say, all your posts are helpful & informative & there's a wonderful sense of community, mutual support & kindness. I'm glad I found you; thanks for being here!

I'd like to introduce myself & to ask if anyone has experienced similar to me? I've been told I have functional symptoms, & would really appreciate any advice on how to cope...

My journey began in summer 2015 when I had what I initially thought was excruciating dental pain. I'd had a tooth removed (lower left jaw) & an implant put in, & thought the pain was related to that procedure. However, my dentist couldn't find anything awry. Additionally, the left side of my face dropped & I was drooling. The jaw pain was unbearable. Cue brain MRIs, painkillers, blood tests, off to neurology, etc. I was told Bell's palsy & trigeminal neuralgia. The pain thankfully cleared after a short course of amitriptyline. I was still fatigued, but thought that would pass. I went back to work.

Since then, I've had to go to a neurology clinic every 6 months. To be honest, I thought I'd recovered after that 1st episode. I thought being seen again was just a precaution, & I'd soon be discharged. But, no...

Although my face pain subsided, it still gets sore. My left eyelid twitches. And new, weird, left-sided symptoms have emerged: painful arm, tingling, heavy feeling in leg, numbness, weakness. The fatigue never cleared, & has, in fact, got progressively worse. More MRIs. All normal. Neuro suggested & tested for Lyme (Negative). Very confusing & worrying.

I've tried to get on with life regardless, working etc. It's been hard, as I've got more fatigued, but I've not wanted to accept anything's really wrong. This March I was forced to face it, though, as I had an episode of severe left-sided symptoms & ended up in A&E where they kept me in a week & checked for stroke, etc. CT & MRI were clear; they said it could be hemiplegic migraine. The on-duty neuro said I should discuss lumbar puncture with my own neuro (why? I wasn't told..)

I saw my own neuro last month & he suggested my symptoms are 'functional' & showed me Jon Stone's website. He'll see me again in 6 months, & suggests in the meantime my GP co-ordinates physio, & other symptom relief as needed. But that's it...It's basically a "wait & see" approach, it seems.

The extreme symptoms have gradually cleared, but I'm left with debilitating ongoing fatigue, arm pain, leg tingling, weakness, numbness; also on & off blurred vision, sore throat, neck, & face. All on my left side. My GP is good but hasn't heard of FND. I feel left alone with the website. I'm wondering, what now? Will having physio prevent further episodes? Will it help me get fully well??

Apologies this is so long. It's helpful to write it all out though, & maybe it resonates with others? Has anyone experienced similar? Or have any tips? I'd be interested & grateful to hear...

Thank you for reading.

[Cmb3210]

Hi kitt ...Im chris...don't worry your not alone...we are here for u😊....I've been studying fnd/conversion disorder..both the same thing... for over a year and a half now...back in October 2016 my wife suddenly couldn't walk n was in a wheelchair for4months....we've come a very long way n i want u to know there is light at the end of the tunnel..I'm at work right now wishi had more time to write..i will later though...first let me ask do u understand what fnd is?..the first thing u want to do is acceptthe diagnosis n know that it is very real....2 educate yourself about it n what it is n involves....I'll be here to talk to u n tell u about it also...here is a link u can watch about it...they use the term TMS...same thing as fnd/conversion disorder youtu.be/wExw0ckCysI(Not working as expected?)

[Kittilyn in reply to Cmb3210]

Thank you for your kind reply. I'll watch the video, it looks helpful.

I guess I do need to research more what's meant by functional symptoms.

Mainly I'm wondering what treatments will aid recovery. So far, my doctor has suggested physio, but that's it.

I'm concerned about what's been happening to me, but fortunately am not depressed or anxious. Thanks again, & I really hope your wife is doing well today.

[Chingona]

I'm in the same boat in a sense. I think we've chatted a little bit before, but I have left sided issues too and seizures. My neurologist recently just told me the same thing, he wasn't sure if I had FND but right now he thinks it's likely . Basically he said, I'm not sure what is wrong with you, you probably won't get better, keep doing what you're doing, and see you in a year for another MRI.

I understand the frustration and honestly after that appointment I felt pretty upset because I've been working so hard to get my life back together and I have really improved with exercise, keto diet, and THC/CBD oils, but once a month, its like the rug is pulled out from underneath me and it sucks! I work, I have kids, I'm training for a triathlon and most days I feel pretty good (always numb, but tolerable) and then suddenly I'm in tremors, I have short term memory loss, I have seizures, and I'm a mess, walking and talking weird, unable to drive.

The thing is doctors don't have all the answers and they are limited in their ability to help. They are only one factor in your healing. If feel like every time I've had a doctors appointment I've felt disappointed but that's because I wasn't owning my health. We know our bodies, and how we feel, we have the power to try new things, and be proactive. it's important not to get discouraged and never give up on your self.

When I look back on last year compared to this year, it puts things in perspective. I really am doing a lot better, but I've also made some huge adjustments with my lifestyle and I need to keep that in mind and be grateful, and hopeful that I will continue to improve.

Hang in there Kittilyn!

[Kittilyn in reply to Chingona]

Hi Chingona, thanks so much for replying. Yes, I think we did chat before, as I have left-side issues too. I hope you're not doing too badly today.

Yes, i agree with you that it's important to own our own health, & to empower ourselves as much as we can. When I was in hospital recently, I thought a lot about how, in a sense, the system works to construct people as 'passive patients'. Not necessarily with any malice, but because it's most efficient for large health systems (I'm in the UK). With an undiagnosed, chronic, and/or difficult to treat condition, this can leave you bewildered & with a lack of agency; feeling passed from test to test, pillar to post, at the mercy of medical know-how (or don't-know-how!) So being proactive, as you say, sounds right..

I really take heart from hearing how you're doing a lot better now than last year. That's very reassuring, & I hope you continue to improve.

I've begun to grasp that I may have to adjust my lifestyle to better support health/healing. Being off work these past few weeks has given me a chance to consider that the crazy-busy pace I've been going at may no longer be advisable, or possible..

One day at a time...

Take care, & thanks again.

[Cmb3210]

It seems to be everyone's left side...it's always my wife's left side...I'm curious are u right handed..wonder if it's a dominant thing..so your left side goes if your right handed???just a thought...yes kit things can get better...let me tell u....my wife worked In a pharmacy for a retail store for18years..when shewas hospitalized she was out of work for6months...in a wheelchair for4months...while in the hospital she could only move her feet up off the mattress about a half inch...it took her all the effort in the world just to move that much...it was the worst year emotionally ...physically...and financially we've had...fast forward a year later...she can walk run...jump..and she has now changed jobs after 18years at the same place..guess Where she works??for the same hospital she was stuck in a bed at unable to lift her feet a year ago...it's like a damn movie lol...i still can't believe it..if someone told me that a year later we would be where we are at i would of never believed it ..and we are having our best year financially and.emotionally...not physically yet because she's like90 percent...she has a little more healing to go..like10percent..there is hope kitt..and everyone else who reads this there is hope

[Kittilyn]

Hi. Yes, I'm right-handed...

interestingly, the 1st thing the last neuro I saw said to me was "which is your dominant hand, left or right?" He didn't explain why he'd asked, though...

Wow, your wife's experience sounds very difficult. However, it's great to hear she's now doing so well. May she continue to improve. And the change of job sounds like it's been very positive for her.

I'm wondering what the future holds for me. My job is very busy & stressful; it may be I need to re-think whether I want to (or even can) return to that exact pace. We'll have to see...

[Cmb3210]

My wife also was very stressed and fast paced asst her job..no lunch or breaks even..they had her sign a waiver that she wouldn't sue for missed lunches..it was crazy...she's a pharmacy tech....the hospital believe it or not is slower paced n of course extra caring

[Hopeful40]

Hello. My heart goes out to you.

Have you been accurately tested for Lyme Disease and co-infections outside of the conventional medical? The symptoms mirror FND. I had not realized until experiencing all of this myself that there is Acute Lyme and Chronic Lyme and the conventional medical does not recognize Chronic Lyme Disease. It is very sad that so many are not being diagnosed correctly because of this.

I had been diagnosed with FND and felt very much that something was being missed or over looked so I continued searching for answers and very thankful that I did. I have Lyme and many co-infections.

With Lyme/ Tick Borne Illness it can be dormant in our bodies also. Many do not recall a tick or rash like myself. When the immune system gets lowered for any reason, sickness, a surgery, accident and so many others things this can cause the immune system to be imbalanced therefore the body is not able to fight the microbes on its own any longer.

Here is a link to help with a better understanding. I am in the US however this is a worldwide problem:

rawlsmd.com/health-articles...

[Kittilyn in reply to Hopeful40]

Thank you for the link, Hopeful; that's a very interesting & informative article...

my consultant did consider Lyme, actually, & I had a blood test which came back negative. However, he said this can sometimes be false. I'll ask about it again when I next see him.

Thanks again & I hope you're doing well.