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Hi, my name is pendulumbob!

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pendulumbob
pendulumbob Community member Posts: 3 Listener
Hello! I have an official diagnosis of FND - after which I am now being referred to a genetisist for testing for Ehlers-Danlos Syndrome because both my neurologist and gp agree I meet the diagnostic criteria for hEDS. Apparently my neurological problems are probably due to my connective tissue.

I'm currently attempting to muddle my way through a physics degree but due to the (until this week) lack of a concrete diagnosis I haven't been able to access support from the university.

I'm hoping this forum will be able to help me with advice as I have been struggling to filter through the swathes of information on the internet.

Comments

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    Hey @pendulumbob. Firstly, I would like to say a warm welcome to Scope's forum.

    How are you currently feeling about having an official diagnosis of FND? It sounds, somewhat, like a relief - especially in the sense of being able to access more support. 

    I can hear that accessing support from the university is important to you. Have you been able to reach out to your university's disability team yet to get some more support in place?

    I am wishing you the best of luck with your physics degree. Additionally, if there is any advice you are looking for in particular please do let us know and we will do our best to advise you  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hello and a warm welcome @pendulumbob and I hope your studies are going well :) 

    Thanks for reaching out and joining the community today, I hope you find it a friendly and supportive place to spend time.

    It sounds like you've come up against some barriers to additional support at uni, I'm really sorry to hear this. As Laura has mentioned, I'd encourage you to get in touch with your university's 'Disability Services' if you aren't already. 

    What sorts of support do you feel would help? It might be helpful to see if you can keep a written record, or even a diary of your week, and the times support would be a benefit, to help evidence this to your uni. I'm aware that things might fluctuate at times, of course. 

    Have any other forms of support been offered to you at all?
    Online Community Coordinator
    Scope

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  • chiarieds
    chiarieds Community member Posts: 16,130 Disability Gamechanger
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    Hi @pendulumbob - & welcome to the community from me also. As someone that has HEDS, I'd just like to wish you well when you see your geneticist. Do you know when that will be?
    Whilst neurological problems can occur with hEDS, to be honest I'm not sure FND would be one. FND as it's name suggests is a 'functional' problem, which I can't see as being due to a faulty heritable connective tissue disorder. You can read more about the neurological problems that have been found in EDS here: https://www.ehlers-danlos.com/wp-content/uploads/2022/03/Henderson_et_al-2017-American_Journal_of_Medical_Genetics_Part_C-_Seminars_in_Medical_Genetics.pdf  tho as this paper suggests, further research is needed.
    That's of course not to say you don't have FND, just IMHO the 2 would not be associated from my understanding & reading of the medical literature.
  • pendulumbob
    pendulumbob Community member Posts: 3 Listener
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    Hello,

    It's interesting that you say that a diagnosis of FND makes no sense because I agree! FND makes no sense from what the neurologist said and the internet contradicts him, but nothing explaining my symptoms was found on an MRI.

    He did the beighton test (albeit shoddily) and suggested the sensory symtoms were likely due to hypermobilty and an investigation was warranted. Even if my neurological symptoms are not a result of EDS I definitely meet the criteria for referral from my gp's perspective too. My medical history also lines up. Over the past four years my mobility has been significantly reduced making it difficult for me to leave the house without somebody else and when I do I often get injured. My neurological symptoms are predominantly sensory with frequent muscle spasms and are definitely not the biggest of my worries.

    Without some form of diagnosis and evidence it is very difficult to get support from the disability service at university so I'm glad I will finally be able to get support from them. Even if the specialist I've been referred to doesn't agree with the diagnosis of FND - I'm just glad somebody is recognising there is a problem and not passing me on to another specialist. Until now nearly every doctor I've seen has said there's obviously something wrong but they don't know what. The only form of support I've been able to recieve until now has been for my hearing issues because those have been well documented since I was a baby.

    I'm definitely going to try the diary idea. I have a sit down meeting booked with the disability service after easter break and I will hopefully get the oppourtunity to explain it to them. I did get a lot of help during sixth form and school but university is slightly different.

    I don't have an appoinment with the geneticist yet but hopefully the letter will come through soon.

  • chiarieds
    chiarieds Community member Posts: 16,130 Disability Gamechanger
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    Hi again - sorry for the delay in getting back to you as work has just completed in getting my new roof.
    Part of your story resonates with me especially,
    nearly every doctor I've seen has said there's obviously something wrong but they don't know what.
    Unfortunately it also does seem to occur with many disorders, that if one diagnosis is made, then anything else is put down to that! It can be the case; my neurological problems are due to Chiari 1 Malformation which is associated in a few of us with EDS, as mentioned in the paper I linked to. I keep up to date with Chiari 1 Malformation & EDS on a USA website, & all I can say is that up to now FND isn't associated with EDS.
    As Alex suggests, keeping a diary may help show the help you need at Uni. Please let us know how you get on.
  • pendulumbob
    pendulumbob Community member Posts: 3 Listener
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    Hi, I have been doing exams. However, I have officially been diagnosed with hEDS, referred for treatment and I'm going through the process of getting re-registered with disability services at the university. The tip on keeping a diary was especially helpful.

    In regards to the hEDS and FND I will ask when I start treatment in July what the specialist thinks. The hospital that is treating me is also one of the only places doing research on the condition so it will be interesting to see what they answer.
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