Confused

[Renwick1]

Just heard dr Jon stone on webinar and I'm now more confused than ever. He talks about just movents ,my symptoms are a lot worse as in it goes all over the body but I think the central nervous system can go anywhere . Ir brain / stomach / limbs / coordination /nausea / anywhere as my symptoms vary so quickly .maybe I'm a freak .had enough . One way out as I've lost wife home job and sanity . This is a pile of shit coz they don't even know .feel so let down so no change there.

[shirshir718]

Hi, Yes I can understand what you mean. I have gastric signs and nausea as part of my flare. That's why I asked Dr Stone the question if my gastric problems (anorexia and nausea) is part of FND. Because when I have a flare I have nausea together with limb weaknesses and generalised weakness. He said it's more likely to be something else e.g. functional digestive problem and needs other investigation.... So I'm confused too... What are your symptoms Renwick?

[Ailsaw in reply to shirshir718]

Strangely I have recently started to experience nausea and seems to occur mostly in the morning, sometimes eating something helps it

[Renwick1 in reply to shirshir718]

They are to many to list and I can't find words to describe a lot of them. If I could talk to you on a landline I would be happy to discuss them. My email is [e-mail]

[Ailsaw]

Personally I find Dr Stone doesn't tell us anything we don't already know and he was totally miffed at me when I gave him 8 out of 10 as to how much I believed my diagnosis of fnd

[Hopeful40]

I can understand your questions as I had them all also. I would like to share with you what I learned for myself after being diagnosed with FND. My symptoms were many also as well as my digestive. I knew that my body was not processing anything correctly and I struggled with anyone believing me with this. I stepped out of the conventional medical field and had the Western Blot blood test done ( I am in the US) and realized I have a tick borne illness. I have many co infections from Lyme Disease. They call this the "Great Imitator".

When Lyme Disease is in the "chronic" state or one has had for a while the conventional medical does not acknowledge this as they follow the CDC guidelines. They are limited on the help or answers they can provide us because of this which I was not aware of in the beginning of this journey. If your able to watch the documentary "Under Our Skin" . It may help with a better understanding.

Remain hopeful. I wish all of you answers to why they are not well. There is a reason for each of us why we have become symptomatic. I will always be so grateful I followed my heart and found answers. Thinking of each one of you.

[Brownie1918 in reply to Hopeful40]

I have also had the Western Blot test done which came back negative ( also from US ) but Naturopathic told me it doesn’t mean I don’t have Lyme, and heard the same thing Lyme is the “Great Imitator” did your test come back positive? How are you doing now? I try to stay positive and do my best to work through my symptoms as best I can.

[Hopeful40]

Your Naturopathic Dr is correct. This test does not always show accurate results. When I did the Western Blot I checked for Lyme as well as co- infections also which showed intermediate for Lyme and positive for Bartonella and Mycoplasma. After learning more since the testing, I now realize that a clinical diagnosis is done as well because of the testing is not always accurate. This is hard knowing many test and may not be getting accurate results and the tests are not always read accurately also.

My heart goes out to you. I am doing much better than I was doing a year ago. It takes time for our bodies to heal an a lot of trail and error to find what works as our bodies all react differently. I am here if you ever want to message. I would be happy to share more with you if you would like. Your not alone and remain hopeful.

Hugs-Kimberly

[Brownie1918 in reply to Hopeful40]

Thank you. I am so grateful to have been introduced to this community, I so happy to know there are others out there who are going through the same things as me and who truly understand. Thanks for replying and also for sharing.

[Chris_uk_kent]

FND I find Dr Stone a bit patronising, maybe it's just me! I have been going through the same mentally, GET help don't be affraid to cry out and get support, please stay strong we are here to help, Im a 46 year old male suffering for 9 years so please feel free to ask away, if I can't help maybe other people will aswell, keep smiling and keep in touch please

[Chaz61 in reply to Chris_uk_kent]

Hi Chris what I would like to no can fnd run in family's can I pass this down to my sons as 15 years ago my self 2 son were sent to a top children hospital in Liverpool England as we were showing reflex prombles in are legs we spent 12 moths have tests in end we were told we had inherited spastic disorder but I have just been seen by the Walton centur a brain hospital and been told I may not have that disorder but have fnd I have read most of what poeple put on here and I don't fell stressed yes I get upset over things happen in life like others do but I just laugh it off I don't believe I have fnd but I called have that as well as others thing I don't no what to think anymore can you put me right if I have fnd can my sons have it

[VivienneWaterworth in reply to Chaz61]

The answer is that I don't think so, however sometimes there are more than 1 person in a family with it. e.g. one of my daughters occasionally gets transient symptoms that come and go, but not enough for her to be diagnosed. We don't share many symptoms at all...almost as if I have that symptom, she won't have it and vice versa. While some sisters have it (very rare), I suspect that there's just as many friends who both get it.

With your son, it's possibly more likely that you both have some nutrient deficiency, such as magnesium (essential food for muscles), Vitamin B12 (essential food for nerves), B6, Folate etc. There seems to be a disproportionate number of people with FND who have these deficiencies, even when blood tests show them to be in the lower half of normal.

I used to have big problems with reflexes being way too overactive or missing. I also had major problems with my muscles, cramps, ropes, extreme weakness and fatigue, to the point where I couldn't just walk along a footpath and step off onto the road. No way! Had to do it like an old lady. Now, no problems at all. My doctor kept pushing me to take more magnesium, until my body started rejected the excess as diarrhoea. On that basis, depending on how much my muscles get used, I take between 3 and 8 huge magnesium tablets a day.

One lady with FND went from 30 seizures (non epileptic) a day down to less than 10, by having daily injections of Vitamin B12. While that is an extreme case, B12 deficiency can cause all kinds of weird nerve issues, including stuffing up our reflexes and numbness/fire-like pain in our feet.

If what you have is inherited, you could look into getting your DNA checked against the rare diseases database.

I hope you find some answers, but he won't necessarily end up like you...though both inherited and environmental issues can possibly increase that risk.

Have you checked out the following websites:

neurosymptoms.org

fndhope.org

They might be able to help you find some answers.

[Hidden]

I too am taking the route of getting tested for Lyme as our symptoms are way too similar to the disease.

First of all the ELISA test shows 9/10 a false negative because it really only works if you're newly infected with Lyme. I've had this test twice and twice negative.

They don't do the Western Blot Test here in Ireland.

I'm now going to get one called the EliSpot test which is 20-200 times MORE SENSITIVE than any other Lyme test and also other tests for co-infections done in Armin Labs in Germany.

I will have to fill 7 tests tubes of blood and have my GP sign off on them and they will be posted to Germany.

I need this to be eliminated.

I personally think everyone needs this to be eliminated. Save up slowly for it.

I'm dealing with FND now for nearly four years and I'm gona shout this out... I think it's all a crock of shit!!!! Well, it will remain that until I have researched, tried and tested every possible other avenue I can! I have no quality of life and I damn well want it back and will fight for it!

FND: FRANKLY NO DIAGNOSIS!!!

Love to you all!!! Xxxxx

[Ailsaw in reply to Hidden]

My step dad always thought I may have Lyme disease after I contracted a strange skin disease that became worse with standard treatment such as steroids. They never came up with an answer to it just said unexplained. I have been ill on and off for years. I am going to mention it to my doctor on 15th Dec but don't have any hopes of getting tests but would go private if necessary as I too want to my life back, but where would I start?

[Hopeful40 in reply to Ailsaw]

Thinking of you Ailsaw. Sorry for your struggle with your health. Where do you live? Have you ever been seen by a Lyme Literate Medical Doctor( LLMD)?

[Chris_uk_kent in reply to Hidden]

Well said, keep fighting

[Hopeful40]

C-B-S

I hope that you find answers for yourself so you can regain your health. Please keep me up to date as you learn more.

I hope the day comes soon that they have more accurate testing for tick borne illnesses as well as our conventional doctors acknowledge it as well. Until then stepping out of the conventional medical and working with the naturalpath has helped me regain my health. It is a slow process however working with people that look at our whole body and work on rebuilding the immune system has made a difference for myself. I have been shown a lot of compassion from them and have never been made to feel as if my symptoms are something I have to live with. I am so grateful I have found people that " think out of the box" as it is life changing for me.

Follow your heart and I will keep you wrapped in a blanket of prayer and remain hopeful.

Hugs- Kimberly

[Hidden]

Kimberly I will definitely keep you up to date on what the out come is. That's a promise! Thanks so much for your lovely support, it means so much xx

Alisaw, where are you based??

Unfortunately, these tests I am getting done are quite expensive but I need an answer. I'm on disability and have a medical card but these tests aren't even recognised in Ireland but there is one Lyme Literate doctor in Dublin who treats Lyme positive patients.

If people don't have the means I would suggest saving for them as it would be worth it to know. Xxx

[Ailsaw]

Hi I'm in Scotland and getting anything here is a nightmare took them two years before sending me to a neurologist to be diagnosed with functional neurological disorder but I'm not convinced, I've been ill for years and they just brushed off the horrible skin condition and rash I had for over a year as they couldn't explain it.

Best wishes

Ailsa

[Hidden in reply to Ailsaw]

Ok Ailsa, this is the website for the labs in Germany for the Lyme testing. All the information possible is on it plus you can email them and they are unbelievably amazing at responding back really fast!

You need to research is there any Lyme Literate doctor in Scotland. We have one in Dublin. Your nearest one could be in Northern Ireland maybe.

I've also put two links to YouTube vids on Lyme... Only both half hour long... Really make you think. It's definitely something we all need to eliminate.

Much love

Carolyn xxx

PS. Unfortunately we have to do this ourselves!! Our medical systems fail us xx

arminlabs.com/en

m.youtube.com/watch?v=zw3zj...(Not working as expected?)

m.youtube.com/watch?v=d8SPG...(Not working as expected?)

[Ailsaw in reply to Hidden]

Thanks for your help x

[Hidden in reply to Ailsaw]

No problem. Stay in touch! Xx

[Hidden]

Does anyone have a link to this webinar please? I missed it, thanks in advance x

[arlene9]

I'm also confused because both my legs have the same symptoms I can hardly walk and here in South Africa you are so limited with health care if you don't have medical aid I have to make the best but there's days when I feel like giving up altogether my spine is in constant pain I'm just so tired no work staying with family that's not very understanding about how I feel its just to much.