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I'm new here!

Hi, my name is delightfulgal4. I'm here because I was born with hip dysplasia and have had hip surgery at 48. Last year May 2022 I dislocated my knee and my peroneal nerve was severed. Now I have foot drop and have to wear an AFO. not the easiest but it is helping me with my gait and lifting my foot

#MightyTogether #HipDysplasia

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Why are you limping?!

I was a new Mom in 1998 and a nurse who worked in the ICU with a very physical and demanding job. I sought help with the pain I had in my right leg. I was worked up for Lupus due to a positive ANA but nothing really ever came of it. I would have right hip pain off & on through the years but chalked that up to the 12+ hour shifts I worked due to being physical the entire shift and fatigue from working long hours. I was then a mother of 2 who had a house to take care of.

In 2015, now a Nurse Practitioner, I decided that I would train for a marathon. I had some musculoskeletal problems during that time, of which I self-diagnosed with chin-splints, worse on the right. I developed a foot-drop like problem when trying to speed walk, most noticeable in late 2017 that started a workup of being diagnosed via MRI that I have a torn hamstring on the right so we chalked that up to an injury in high school and focused on physical therapy.

Enter 2022, the end of the COVID-19 pandemic: at the beginning of that year I noticed my right calf was smaller than the left. I knew as a practitioner that was not right! So I went for a second opinion with an Orthopedic provider who told me I needed to see a Neurologist. I was actually mad at him at first because I thought that he was rude and I felt put-off. However, he was just honest telling me that he did not know what the problem was and it was not an Orthopedic problem.

My great and compassionate Neurologist assured me that she would get to the bottom of things for me and I was diagnosed with MS in November 2022.

What’s my take away: Take care of yourself – do not ignore yourself! Be persistent and be your own advocate!

5 reactions
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I'm new here!

Hi, my name is mrsjmpa. I'm curious about living with chronic pain, sciatic nerve injury, foot drop palsy, depression, anxiety, and parenting a young adult child who became blind in late teenage years.

#MightyTogether #Depression #Anxiety

12 reactions 8 comments
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My journey

I have been having problems with my right knee. I had a knee scope November 2022. I thought everything was ok, until I couldn’t move my toes and I all of a sudden I could walk I had a tingling and numbing sensation on the right side of my body. I went to the emergency room January of 2023 to find out I have foot drop and he recommended me to go see a neurologist. Went to go see a neurologist she said after she did an exam on me, my right side side of completely weak and I was showing signs of Multiple Sclerosis. Ok boom she wanted me to go to the emergency on a Monday Morning so I can start my high dose of steroids. The steroids worked miracles but when I was discharged I started back dragging my foot and could barely walk. I am excited to say
#MultipleSclerosis

1 reaction 1 comment
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MS Medicine Aubajio

I just started the MS medicine Aubajio today, and I'm looking for feedback from people who are taking it. Want to know what I might to expect as far as side effects or any information about experienced feelings. I have been hesitant about taking any medicines at all, hoping that I that my MS would stop any more progression. I got misdiagnosed in 2014 and it raised its ugly head again in 2018. I started taking Copaxone then but had a reaction of shortnees of breath after a month, then stopped taking it. It's taken me this long to start taking this after what I would call a couple of relapses. Hugs, and foot vibration. My main symptom when it started was foot drop and muscle weakness. It hadn't advanced much until lately so I'm going to try again hoping for some relief. Like I said any information would help. Thank you so much.

1 reaction 3 comments
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I’m new here!

Hi, my name is debzhancox. I'm here because i have been diagnosed with CRPS in my left leg just above the knee down to the tips of my toes. I also have CRPS, Dupuytren's contracture and Osteoarthritis in my right hand/wrist. im currently in a wheelchair as im unable to weigh bear on my left leg, its very stiff resulting in being unable to bend or straighten it, its stuck in a slight bend and i also have foot drop

#MightyTogether

2 comments
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Living with FND without realising I had FND

I only just found out I have a neurological disorder called Neurological Functioning Disorder (FND)

Had I known about it years ago, no but the symptoms were there.

I’ve been living with major back pains for a few years now although having bulging discs and a very slight hip tear it should NOT cause my leg to be weak and numb and make my walking life a living hell, balance being of and not being able to walk, foot dragging behind me like I had ‘drop foot.’

Many times I’ve been up to hospitals and also having a inpatient hospital visit for a week due to this because I was not able to move my leg at times throughout the day and it kept happening and worsening. I had no idea what was going on with me all I did know was that I was sick and tired of this day in and day out my left leg would be numb, weak, tingle, get frozen cold, I even have to lift my leg up with my hands if I wanted it crossed over my right leg, when walking the leg will drag behind me also at times which my physiotherapist told me was minor foot drop, and trying to strengthen the leg up and it wouldn’t so I be living my life with a weird leg, walking like I’ve got a carrot up the ass and my minor foot drop. Getting told by everyone I need to start walking properly and saying to them you know and wishing you could but no matter what you try it doesn’t work and you are still walking like a zombie.

But guess what although having many many scans done of my lower back and not finding any nerve impingement or major bulge discs to be causing this it just wasn’t making sense, I first went to a neurosurgeon, 2 of them to be exact, need to have that second opinion, had nothing done but lower back scans. Then I got referred to a Orthopaedic who specialised in hips because dad has hip problems that could be genetic and boy were they genetic, I got his hip displasia and a slight minor tear. But still nothing to be causing my leg problems. My Orthopaedic referred me to Neurologist he did a EEG on my leg to check the nerve conduction by slightly electrocuting them, that test came back normal so he actually sent me for a full body scan Brain to just above the L5 disc (as L5 down had already been scanned many times) first doctor in years who has ever sent me for basically a whole body scan because he was wondering what the hell was going on and I kept asking him because 4 specialist I’ve seen in and it was so frustrating just wanting to know what has been going on with me for a few years now.

Scan results came back my upper spine and neck were perfect, but my brain was not, I have a bit of brain damage it’s only minor at the moment and it was then he diagnosed me with FND, the white matter on the brain scan wasn’t enough for it to be diagnosed as MS. He asked questions on how my childhood had been, so scared to tell a stranger the past but he is a dr and needed the root of things, I told him my past traumas, getting bashed up in and out of school and hitting my head open numerous of times during that. I did forget to tell him the minor concussions I had playing soccer which would have probably contributed to the worsening of this condition.

He explained FND is a neurological disorder where you have limb weakness, numbness and pain it’s a real problem and it’s not imagined. It is a problem with the functioning of the nervous system, it’s a problem of the way the brain sends messages to the body, it’s like having a software problem rather than a hardware problem on a computer. Having shown my brain scan there is a matter of white (as said just before) which he said that, that bit of my brain doesn’t work anymore so the scan shows physical damage and there is no treatment to cure that bit but I can try help by getting help from professionals to help train my brain if possible.

FND explains so much more then just the physicalness like the weak and numb leg, but also why I’m constantly tired dozing off when I don’t want to, especially whilst out and at work; having a bad memory, hence why I’m always needing to write important stuff down as reminders wherever I go; Déréalisation episodes; Foreign Accent Syndrome (explains why I haven’t been able to get rid of the English accent although having heritage and being there I should have gotten my Australian normal voice back when I came back to Australia a couple years ago but basically I’m stuck with the English unless my brain says so, as I’ve read); Word finding difficulty, stuttering, struggle getting words out when speaking sentences; Needing to pee so much in a day, on some days I can pee 30 times a day, how embarrassing ; both legs jerk and twitch randomly also.

I can’t cure the brain damage that is done but I can train my brain so will be finding the right professionals for that and be working on hopefully bettering my life before the damage gets worst later on in life.

3 comments
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Living with FND and not realising what was happening. Part 1 #FND #ChronicPain #braindamage #FuntionalNeurologicalDisorder

I only just found out I have a neurological disorder called Neurological Functioning Disorder (FND)
Had I known about it years ago, no, but the symptoms were there.
I’ve been living with major back pains for a few years now although having bulging discs and a very slight hip tear it should NOT cause my leg to be weak and numb and make my walking life a living hell.
Many times I’ve been up to hospitals and also having a inpatient hospital visit for a week due to this because I was not able to move my leg at times throughout the day and it kept happening and worsening. I had no idea what was going on with me all I did know was that I was sick and tired of this day in and day out my left leg would be numb, weak, tingle, get frozen cold, I even have to lift my leg up if I wanted it crossed over my right leg, when walking the leg will drag behind me also at times which my physiotherapist told me was minor foot drop, and trying to strengthen the leg up and it wouldn’t so I be living my life with a weird leg walking like I’ve got a carrot up the ass and my minor foot drop.

But guess what although having many many scans done of my lower back and not finding any nerve impingement or major bulge discs to be causing this it just wasn’t making sense, I first went to a neurosurgeon, 2 of them to be exact, and they did nothing. Then I got referred to a Orthopaedic who specialised in hips because dad has hip problems that could be genetic and boy were they genetic, I got his hip displasia and a slight minor tear. But still nothing to be causing my leg problems. My Orthopaedic referred me to Neurologist he did a EEG on my leg to check the nerves, that test came back normal so he actually sent me for a full body scan Brain to just above the L5 disc (as L5 down had already been scanned many times)
Scan results came back my upper spine and neck were perfect, but my brain was not, I have a bit of brain damage it’s only minor at the moment and it was then he diagnosed me with FND and asked questions on how my childhood had been, so scared to tell a stranger the past but he is a dr and needed the root of things, I told him my past traumas, getting bashed up in and out of school and hitting my head open numerous of times during that. I did forget to tell him the minor concussions I had playing soccer which would have probably contributed to the worsening of this condition.

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WANTED ! Hacks and ideas how to fit a custom made AFO into an off the shelf shoe !? Any tips how to successfully widen sneakers?

Been wearing different braces for foot drop for decades' After tearing muscles, breaking bones, multiple sprains and developing arthritis in recent years, I was told to try a new kind of brace. This SAFO within a carbon fiber AFO is that bulky it won't even fit into a size 14 / XX wide. Bigger sizes are hard to find and special needs shoes usually only available up to size 12.
#FootDrop