After so many doctors appointments to try to get a terminal diagnosis from being so disabled and not understanding why I have come to the conclusion FND or conversion disorder as the hospital has listed in my chart is a big possibility. It started after a few back surgeries with continued nerve damage and left foot drop weakness going on 6 years. Then started the chronic fatigue and increased weakness up the whole leg when I get panicking about the foot drop. Then followed twitching fasticulations in one leg this one on a few years until suddenly I woke one morning and my left side wouldn't engage well any more so then started my journey down emg after emg to see if I had developed ALS it's been some time and ice been completely bed ridden now weakness moved over to the other leg and the only thing the emg would ever find is rediculpothy. I think regardless of the countless neurologist who say I don't have als every time I feel the muscles go missing or won't engage I ho into panic Then I get huge depersinalization and derealization that happens and just lose my mind crying. I am a 39 year old male by the way. I don't know what to do guys I'm scared I know I have nerve damage in my legs but this extends into my rib now and arms with still no other diagnosis. I guess I wonder if anyone us as bad as me often in bed all day because standing and walking has been extreamly difficult I use a walker now to go to the bathroom. I suffer from severe fear panic and depression and can't find a way out. I am still here and still fighting so I can get to be a father to my 6 year old son who misses me I'm just not seeing a way. I feel like my whole body is just shutting down and no one believes how bad it is. If someone out there is this bad I feel what you are hoing through and please reach out any time. Thanks for listening everyone
I'm lonely and scared: After so many... - Functional Neurol...
I'm lonely and scared
I'm so sorry you are dealing with all of this!! Have you had MRIs and A lumbar puncture to rule out MS? Did they do nerve conduction studies on your legs? If all of this is normal, then try reading books by Dr. Sarno or try the Curable app. It talks about how pain that you had can be sustained because the neural pathways were created and they continue to "fire", even though the event causing the pain originally is gone. Also, check out this video youtu.be/xdxlT68ygt8 and Dr. Shuniner's website:. unlearnyourpain.com/
Don't give up!! I'm in a similar boat and it's tough but we have to try to figure this out!
Yes chronic rediculpothy on my nerve conduction studies unfortunately but nit enough to substantiate the amount of pain I'm in do gets me odd stares. I'm in for a spinal cord stimulator trial in a few weeks and pray it helps. Thank you for the recommended books I will look into it today 🫂
These FND symptoms are out of control. It's so scaring, as if we were dying.
Have you got social psychological and social support to talk about your anxiety ? I tell you that, because FND is stigmatizing and we feel so alone in our suffering.
Yours
Very lonely with out the pych support st the moment but I'm working on it 😕
We feel as a stranger to ourselves and to others when we are ill, specially with functionnal and not structural symptoms .
Moral loneliness conducts to depressive ideas.
You have written : "Very lonely with out the pych support st the moment but I'm working on it" :
good idea, the deal is to have empathic social support, such as a friend, a doctor, a psychiatrist, whoever can help you to reconnect to life, specially your inner life who is safe from FND
Yours
I think I've worn most my family out I get severely scared when episodes randomly act up or become noticeable I fear the worst and always tell my support om probably not going to make over and over.
No one is immune to disease. Could you tell your lovely ones about these anxieties ?
it sounds like functional movement disorder, which is under functional neurological disorder. I had similar symptoms for four years before I finally found a doctor that could diagnose me. I saw a neurologist who specialized in movement disorders. You may try a specialty doctor like that. It is very difficult, especially the uncertain future that it brings. I hope you have a support system, it’s very important.
Since you are bedbound, maybe try to bring your son in and do activities like coloring, reading, watching TV together. You have to make the best of each day. Focus on what you can do, not what you’ve lost. I know it’s easier said than done. I hope you get the help you need.
ToesKnees,
My friend, you are not alone, I promise you. You are here, in a virtual family that is stronger than God himself. We are here for you man. Please know, no matter what, you are not alone. Trust me, my friend. I know to a degree what you are going through. I do not have ALS, I was misdiagnosed and I have Generalized dystonia. The symptoms of what you are saying are a lot like mine. I have had it for a year and a half now, I have to take the max legal dose of meds and use a cane to walk. The meds allow me to use the left half of my body, but my right half is basically fucked, lost and I know it won't ever come back. I am a 26 year old male, so please know... From a brother to a brother, I get it my friend. I get my brother. I 100% get it. The lonely nights, the crying yourself due to the madness, the starving days, the feeling of insanity crawling in every way it can. Trust me, I hear you, I see you, you are not alone. You will never be alone.
I say all this to let you know I am here and the entire virtual family is here. We got you. Before I offer neuro suggestions, I'd like to ask what you have done medically. I typically would suggest stuff on my first post, but... My main concern is your mental health, making sure you are okay, heard, safe, among all other things. If you need to vent, feel free to message me, reply to my comment, do anything man, I am here, we all are here.
If you are comfortable sharing, I want to ask and you can refuse this question or give as many details as youd like. What tests or things have you had done? Anything you can think of. I don't want to offer suggestions and either make you feel false hope or anything. I want to try and give you as personal of advise as I can. This is not putting down any other person commenting, in anyways. This is my approach, everybody commenting has their own approach on how they show they care and are here my friend.
ToesKnees, we are here for you brother. Virtual family are not, we are here.
Best,
Matt
I think the dystonia is correct but not sure what to ask for last I used backofen 10x3 with little relife.
If you are diagnosed with genetic mutation Dytonia, I take trihexyphenidyl 3 times a day, 5mg each. It helps me have some quality of life, better than not being able to have independents. That's how I see it at least.
I have an upcoming neuromuscular doctor appointment who dise genetic testing I'll ask about it.
I would ask for x-rays and MRI's of your spine, if those haven't been done. Is any sort of Physiotherapy in the cards, just to have you move some?
Hi everyone sorry for the delay I haven't been sleeping much ir eating well still bed ridden it been a long time. I have had Full mri and CT scans of head abd spine with contrast and a lumbar puncture last year during contracting lyme. I have had 4 emg studies that suggest chronic rediculpothy up until the last one suggested some dylaminating axonal poly neuropathy but was refuted by a neuro muscle specialist as just the same chronic ridiculopathy I have had since 2019 with little to no changes from previousemg studies. I am set for yet another neuromuscular opinion just incase as the legs burning tonight twitching like crazy and muscles in my abdominal and left rib just stop working well. I think cfs/me maybe entangled into this whole picture also. I'm just not sure how long I can bear the pain and dissability it's terrified me to the point of having no hope. I am following up with pain management at the moment and on medication to help but it's very little and now they suggest spinal cord stimulator just to help me sit upright with out my legs hurting so much. They labeled it faild back syndrome
I'm just fighting every moment to continue to be here for my sin another year and it's hard so I'll be looking to find more talk therapy
Love you all and hope you are well 🫂
I'm starting to wonder if my medication can be contributing to increase nerve pain and restlessness. Currently I am on Ativan 4g,Gabapentin 1200mg, Cymbalta 60mg, Oxycodone 15mg, daily I'm concerned but scared as I know withdraw for me can be tormenting. I will follow up when I speak with my psychiatrist to see if this is an added issue.
Again thank you all for just listening you help more than you know 🙏
This is just me but gabapentin made my whole body feel like I was on fire. I did not continue taking that and need that changed. I do make it a habit of taking vitamins D3, K1 andK2, C, Zinc, and B12.
In any case, If you want to isolate one of the above, I'd actually talk to your doctor about getting off the Cymbalta first. At its core, it's a psych medication for depression. If you were not depressed at the time when you first started taking it, then you may want to consider how you feel if you're not on it.
Yes the Gabapentine I noticed the withdrawl effect is burning kegs on me if I miss a day so it could be adding to my issue. I might try to reduce that with my dotor first then Cymbalta I'm kinda stuck on for life I was on an antidepressant very young for 20 years or more so those receptors are gone now with out the medication it would be a very long time to recover. I just found I have no testosterone so will be supplementing that soon and maybe that will help some but it might be from the opioid at the moment.Total T is 333
At the risk of sounding like a hippie, I'd probably really consider taking a look at vitamin levels and talking to a nutritionist, if possible. A lot of doctors overlook nutrients in our systems. I can't help much with T levels.
Hemiplegic migraine ?
I fint get painful migranes but I do experience depersonalization derealization episodes that increase this weakness in my left thoracic dinw to foot ?
Dear friend. You sound like you have neuroborreliosis. You need treatment and to see someone like professor Lambert in Dublin. He says 85 pc of his patients wrongly dx with FND. Lyme disease is a complex disease best understood and treated by virologists and immunologists. It wrecks the nervous system, can cross the brain barrier and cause devastating arthritis. Get your mojo back and getting fighting to be treated +
I treated for 6 months with IV and combination abx I understood getting worse before better but I ended up much much worse with out recovery after previous 3 combination antibiotics. I lost alot of motor control and was unable to even support my hips or ankles laying down without pain
I was seeing the president of ilads recently and there's just to many variables alot of damage and nothing to prove if persistent infection is there
hi. I’m so sorry you are going through this. I understand the shut down. I understand not feeling believed. I understand the guilt from not being there the way you’d like for your son. I have FND and two kids (4yo and 18mo). Most days are still very hard, but I am making tremendous progress due to the skills I’ve learned at FNDcourage.org The next class is starting up soon and I would highly recommend you look into it. It’s more than just a class with skills, it’s a community of others with FND lead by a practitioner who has dedicated her career to healing FND. Your FND is real. You’re not alone. Don’t give up.
If I get any news regarding all my symptoms at the new neuromuscular doctors appointment I will update you all. I hope to help you each one day like you have all helped me 🫂
Hey, your not alone, sometimes I'm bedridden for weeks, then I'll have a few good days then back down. The last week has been great then today I woke up with fnd, It's so difficult to stay happy and optimistic when your trapped I your own body and a fraction of the perso you used to be.
I can relate to this so much and thank you for taking time to show your support. I hope one day we can just beat this all and leave it behind us 🫂.
I believe you
I have also had multiple spinal surgeries but continued to worsen
My name is APC
I understand how you feel
With the depression and anxiety
Don’t give up and just do your best that is all you can do
So new neuromuscular doctor did another EMG and I guess did not find much change from previous studies in 2019 so again no ALS nut she was nice enough to appreciate something is wrong. I have follow up skin biopsy for small fiber neuropathy tomorrow and some genetic testing. She told me she isn't sure what's wrong yet but to stick with her for a bit and she will figure it out. I think it was nice to hear that from a doctor but still feel like it won't lead anywhere.
Symptoms still mostly the same left thoracic and rib cage dissconect with dystonia or full time spasm in the paraspinal. Pins and needles in legs from knees down followed by burning crawling shocking etc. Then there is a nerve down my inner calf on both legs that just vibrates and pulses when I try to stand. Lower abdominal muscles and legs twitch nonstop not sure how it's not als honestly but I guess it's been so long I would be progressing alot more.
Still currently almost 3 years bed ridden still have some muscle mass so that's good. My pain level is horrible even on 5mg oxy x3 a day and Gabapentin,Cymbalta do squat I just currently decided to lower Gabapentine and am now getting the insomnia and restlessness from withdrawl yay!! 😆 🤣
I will update any additional findings from biopsy and genetic testing soon and hope you ate all still holding strong. I thank you and care for you all who like me struggle. I do t understand this disorder I don't get the lack of recognition it has and I'm always searching for more answers.
Let's beat this
Completed all testing at neuromuscular and all I got DXed is Rediculpothy,FND, maybe some form of issacs or morvans syndrom because of the extream peripheral hyperactive nerves in my legs, and chronic pain or failed back surgery
So just starting to push more with the hopes o either get better or just fcking croak
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