Functional Neurological Disorder - FND Hope
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Newly diagnosed need advice

Hi was just wondering if anyone has a story like my partners who went to see a neurologist and was just given a website at the end of the appointment. His story is one night he came back from work with his leg dragging behind him over the next couple of hours he started to have tics and Tourette like behaviour so we rushed him to A&E as he had never had anything like this before. Hospital couldn't find anything wrong and they gave him an appointment to see a neurologist in that time the tics and Tourette's went away however he is unable to walk. Went and saw the neurologist and she just gave us the website neurosymptoms.org and told him to have a load of blood tests. It's been 4 weeks now and we have heard nothing back from the hospital and he still can't walk it's so scary for him. Just wondering if anyone has had anything like this or just been given the same website. Also should I be taking him for walks will that help it make it worse trying to walk? Many thanks

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Hi,

How awful and scary for your partner to go through :(

Very similar story to mine only I got out of bed one morning and went into full body convulsions out of nowhere! Speech was stuttering and was tremulous for the day. When I did get to see a neurologist I was given the diagnosis of FND and told to read the same website as your partner and that I might even cure myself while reading it.

I don't know what advise to give you in regards to your partner not being able to walk but I will tell ye to not give up demanding tests and constantly researching and going back to your GP with possibilities as to what it might be.

This is what I did myself and came to two possible conclusions that correlated with all my symptoms: toxic mould syndrome and Lyme disease

I had already been tested twice for Lyme with negative results but decided, upon researching Ticktalkireland and Armin Labs Germany to send my bloods to Germany and within a week my results came back positive with two co-infections.

I hope you are doing ok yourself as it can be difficult on our partners taking care of us. Ye are fantastic! It is very difficult but just keep searching for an answer!

Xx

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Thanks for your reply. I am trying to stay strong for my partner but it's hard as it's now been 3 weeks and no news from the hospital so basically feels like no one cares. To me this is a major thing my partner can't walk and I don't know what to do I feel very helpless at the moment. I work full time so my partner is on his own all day until I come home and it's getting very depressing for him not being able to do anything. I take him out in a wheelchair when I get home from work and he tries walking but it's not normal walking and it hurts him very much. He is also very exhausted when we get home. He's worried about his job as doctor signed him off for a month but he gets no sick pay so as well I don't know what to do with him getting no income as as bills are starting to come in with no way of paying. Obviously until we get a letter back from the hospital we cannot claim for any benefits so it's all about scary right now. Thanks again for your reply x

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Yep when I was diagnosised the neuro gave me the website and told me to go home and read it I was shocked and still am

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I couldn't walk at all at first and then thought of using a TENS machine to remind my brain to talk to the muscles in my thighs. With it turned on I could walk and when the batteries went flat I'd end up on the floor! It's certainly worth a try. After several weeks I could walk without the tens machine although I still use it frequently as my walking is very poor. Also video him walking in shorts and you'll probably be able to see which muscles the brain has stopped talking to. Good luck.

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Hi, I was exactly the same, diagnosed with FND and NEAD over a year ago, I was given 2 websites to look up and she told me she wouldn’t need to see me again. This was in Glasgow.

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A lot of people mention dr Edwards. There is another great fame in the field who works in Edinburgh. He only treats nhs patients, and would it be an idea for you to ask for an appointment with him?

Best, G.

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Sorry, the name is dr Stone, I forgot to say that.

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Same happened to me so decided to see a private neurologist who said he thought FND and wrote to my GP to get me a referral to St George’s to see Prof Edwards. He confirmed the diagnosis and arranged successful treatment. It all took nearly 3 years though.

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Hi, I too couldn't walk without dragging left leg, constantly limping, had 1 months rehabilitation in London just before Christmas, best thing worked for me was when walking place heel down first, was still painful but stopped the limping and dragging. Walking now 4 months on still not far but more progress then last 3 years. Something so simple has helped me enormously. Wish you success, worth trying.

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Brilliant thanks for your reply I will get him to try this when I get home thanks again

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Hello

I have had the same problem where I was collapsing in front of family members and those in authority while I was in therapy

The doctors could not figure it out and a specialist was unavailable.

I had started an ancient ritual of mind mapping on paper as the part of which is causing the paralyses and you can't walk would then be defined as an individual who then may require assistance or holding a memory.It is a matter of finding that part by mapping it out on paper and other parts would then merge.

shifting that memory to one that is more favorable.

It has worked for me I could not wait for the doctors.

my doctor has told me that it is not one in his favor but my reply was that it is a temporary solution until you find a specialist.

Conversion disorder I have, we are not in control of the symptoms so finding out who is by mind mapping works for me

Responses to all

hope to hear from you soon

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We had a very similar experience. My 12 year old was hospitalized because she lost all function in her arms and legs. We were eventually given the same webpage and sent home. It was frustrating and scary and I felt abandoned and hopeless. I imagine you must feel similar.

What I have learned is that you must become a loud and strong advocate. Start phoning doctors and demanding what you need. I have found neurologist useless. We've seen 4 and none knew what to do for my child. So I took the neurosource web page to my gp and showed her that physio and psyc. was recommended for FND. She got us the referrals we needed. My child is walking again. It took 6 weeks of physio.

At the very least you need a physiotherapist who is familiar with functional movement disorder.

Don't give up, I was really uncomfortable telling doctors what the treatment needs to be but in the end it was the only way to get help. Your boyfriend must be extremely discouraged. He's lucky to have someone who can help him navigate this.

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I was diagnosed over 8 years ago. My 1st symptom was phantom pain in my side. Then I developed a tremor in my right arm. Next I had trouble walking. My left foot will turn in and I land heavy on my right. Sometimes I can only shuffle like Parkinson's. If I try to walk too fast it looks like I have cerebral palsy. Next I started having episode where I was not able to move my arms or legs and could not talk. I refer to them as freeze ups. They frequently last for a couple of hours. I get brain fog and cannot concentrate. I also get variations in my speech. Sometimes I sound hoarse, sometimes I can only whisper. There are times when I struggle to say words and sometimes I stutter. The most unusual is when I babble. It is involuntary speech that sounds like different foreign languages but is not. Through out the day I have dystonia spasms in my arms and whole body myoclonic jerks. I get frequent muscle twitches in my arms and legs. I have trouble swallowing and variations in sight an hearing. I went on medical leave from work and shortly after the 1st year I had to quit my job so I could use my 401K for expenses. I applied for disability and was awarded it with in 6 months.

What I have learned over the years is a "Functional" approach to treatment is recommended. This includes a team, including your primary care Dr.; a physical therapist, occupational therapist, neurologist, and psychotherapist. Cognitive behavioral therapy is recommended by the National Institute of health. From what I understand this approach is common in Canada with their national health care. The challenge I have here in upstate NY is this type of team is not available locally. The psychotherapists I have seen (6 of them) either don't have schedules that allow the regimented Cognitive behavioral therapy treatment plan or they don't think I need therapy! I did see a neuropsychologist for almost a year that was very familiar with the condition but I did not make any progress. She did not think CBT was the right answer. I had one neurologist tell me," the good news is, people do not die from this"!

I have come to accept this condition. It is not a hardware problem. There is not a problem with the brain tissue. It is a software problem. The neuro transmitters are just not working the way they should. I have found deliberate breathing helps. Breath in slowly for the count of three, hold for the count of 4, and exhale completely for the count of 5. This helps redirect and center the brain. Being positive and willful is beneficial. Try to get to a "I can do this" mindset, not a "I have to do this" mindset. Anxiety, Stress, Fear, Worry, and sense of urgency seem to make the symptoms worse. I would encourage your partner to be willing to find solutions to solve day to day barriers. I had to use a walker for several months. My partner, sometimes, has to move my legs for me. I have found that the passive movement reconnects the brain to the muscles and I can take over after a couple of steps. Try to be patient, this is a life changing condition. I also recommend having your partner talk to as many people as possible about the fact that Functional movement disorder is a real thing and is within the possibilities of the human existence. Friends, family, co-workers, anyone that is a part of your life. Spreading the word helps me feel normal. It seems that every time I read a new article the percent of people with this condition goes up.

I wish you both the best and a quick transition back to normal.

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Please do chase the hospital. There are many specialist in the UK for FND and a good few centres he can be both assessed and treated in, either outpatient or inpatient. The sooner treat the better and quicker the outcome. Obviously needs to be confirmed but if it is FND then he will need certain treatments including NEURO physio (not general), Occupational, Psychology and correction of any deficiencies in vitamins and minerals. B12, Folate, Iron, D, Magnesium and Potassium are the main issues we find. If you are on Facebook please do join us via the website FNDHope.org

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sorry, just to add, walking may or may not be good. If he tires out or has problems controlling muscles (a major part of FND as in speech, swallowing, writing, walking etc.) it can be better to do what you can but be aware of overtaxing him.

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Thanks for your reply I have chased the hospital again on Monday and still heard heard nothing it's just getting stupid now it's been a month since we had our appointment with the neurologist at the hospital and until they send the letter to the GP I can't do anything it really feels like no one is taking this seriously 👎

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Lyme and co-infections, particularly Bartonella can cause this. All standard testing will be negative.

Watch the documentary Under Our Skin on Amazon. It’s a spreading epidemic not realized by modern medicine.

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Diagnosed with Parkinson's, I was hospitalized when my heart rate went wonky; spontaneously dropping to 40, or spiking over 120. The cardiologist came in beaming and said that he had very good news; I hadn't had a heart attack; my heart was fine; the problem was my autonomic nervous system; I had MSA; Multiple System Atrophy. With that, he cheerfully left the room and discharged me.

Having never heard of it before, I had to Google MSA to discover that I was dying from a worst-case-senario, true horror-show incurable degenerative disease.

Clearly, he was using the term "good news" in a new and innovative way with which I was totally unfamiliar.

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Hi I went to my first neurology appt last week. After a short examination FND was mentioned and I too was given website to look at. I was told I'd be sent a follow up appt for 6 - 8 weeks where we could discuss it further. No other tests were ordered and I am at a loss. I don't believe I have fnd and waited ages to see Neuro in the first place. I'm quite angry and feel very fobbed off x

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I was diagnosed with FND this past June and I was just diagnosed with Tourette's last week. But I've had tics since I was a little kid, they just got way worse the past month or two. It was so intense they thought it was seizures. Very scary!

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Neurosymptoms website is a good sound NHS recognised site. FND Hope although independent have lots of useful information. Standard practice for Neurology not to take much responsibility for the condition so don't let that worry you.

If you have a look through my older posts there was a Vimeo video which shows a young teacher I think in Australia who had your husband's symptoms and recovered with intense determination.

Best wishes for both of you

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