Just diagnosed a bit confused

Hello

New here after being finally diagnosed today with FND- I have tremors, muscle spasms which limited moment, functional dystonia which can last weeks, and tics. I also suffer from migraines and severe endometriosis. I am really confused I saw a dystonia specialised who thought all my symptoms were related including my endometriosis and neurological symptoms and the neuropyscharist I saw today said that endometriosis has nothing to do with my other symptoms. Previous doc thought I had fibromyalgia after ruling out dystonia but doc today says I do not!!! I am thankful that all the scans and tests etc have come back ok- except a very low Vit D level, and border line low thyroid function- but feel more confused than ever. Is this a normal response to this diagnosis? I would be grateful for any tip any one has to help with symptoms

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  • Hi Sue,

    I'm not sure I can help with symptoms apart from slowing your life down a little or spacing physical tasks out as I find the more I do the worse I get with muscle spasms and tremors.

    Everyone on this site has different symptoms, are at different stages of how long since diagnosis so may be able to give you better advice.

    This site is for chatting, asking questions, just saying if you are having a bad day and getting Suport. Everyone is super friendly and supportive and have a wealth of experience in seeing docs, going through symptoms, learning how to cope with symptoms themselves or giving advice they have learned through professionals, discussing medications, psychological help or physical therapy. It's important that you get referred to a neurologist knowledgeable in FND as many are not.

    One thing we have been chatting about here is the possible link to immune systems, auto immune diseases which many of us seem to have and some have had a physical trauma or illness that had maybe triggered the Symptoms that are called FND.

    There are some who are happy to have a diagnosis of FND especially if you get health support as it's frustrating having symptoms and no answers and there are others who think FND may be a label just given to a variety of symptoms where there is no knowledge or answers.

    Also some question the psychiatric aspect to it. For some there may be help through a psychologist or psychiatrist but it goes back to that theory that this is all in our heads which I hope you have been told is old thinking and not what current FND neurologists believe. They believe it's a physical problem just not sure exactly how it works.

    Lastly I'd say the neuropsychiatrist is wrong to say your endometriosis symptoms had no link to FND as it can be caused by a problem with the immune system allowing endometrial tissue to grow. And also endometriosis can cause some of the symptoms listed on the FND.hope website or the neuro symptoms.org website such as pelvic pain, heavy periods, changes in bowel movements- IBS, changes in bladder function, and fatigue. Not sure if you have any of these but both are symptoms of both conditions. And it's maybe not a neurology theory yet but a lot of us have thyroid issues, and other autoimmune diseases and I'm sure iv read others who have low vitamin D (correct me if I'm wrong).

    I'm medicated for a low thyroid but there may be others who can say what meds or supplements have helped them. I know that sometimes a low thyroid can be caused by something as simple as a cold but I'd suggest getting it checked again maybe a couple of months after your last result.

    We are not professionals but some have had this for a long time and have been researching as they go. As you read the posts then you might have some ideas of what to talk about when you see your neurologist or you might give us some ideas 😊

  • Hi SuetFND, welcome to this fantastic website, took me a very long time to find it but one of the best things I've found, lots of support, advice or even just a chat if anyone is well enough to, I'm better on here after midnight, my days aren't great but towards early hours of morning I less brain fog and pain. Insomnia is awful but at least sitting on my own it's lovely and quiet. Lovely to read and meet people on here who understand what we are all dealing with, especially on really bad days. Best wishes Lisa-anne

  • Hey SuetFND, welcome you will find everyone here is wonderful! I find it's great to have people who understand and I often unload on here, it's helped me keep sane! As has been said we all have different symptoms so many of us can give our advice, support sending you good vibes and hoping you have a good day today 🙃🤗

  • Hi ya. I had to reply and ask if you know your thyroid test numbers? It seems profoundly difficult to be treated well with thyroid here. I was diagnosed with FND due to seizures, tremors, speech issues, fatigue, barely able to walk etc then a few months later found I was hypothyroid. I had my antibodies tested and they were positive for autoimmune disease (hashimotos). Have you had yours tested? It's possible to have this but your TSH to not be out of range yet but there is an argument to treat with levothyroxine sooner rather than later. I'd be asking for this or paying privately (medichecks or blue hprizon) to check myself.

    Since beinf treated with levothyroxine I have improved so much. I'm still having regular blood tests and increases in dose so not optimum yet. I was also extremely vitamin D deficient so have been supplementing that since January. I was taking 10000 per day as directed on vitamin d council website and increased my reading to in the 50s I think. I'm now taking 5000 a day and will test again in the summer.

    I really hope you feel better soon x

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