Have been reading a few of the posts and so many of the symptoms are the same with so many varying degrees. FND, Fibromyalgia,ME,CPN,CF to name a few all of which are really LABELS for I do not have a clue whats wrong with your body .
Could this be a medical cover up of a vaccine gone wrong ? or due to a build up of the chemicals they have put in there food in the past ? And this is an allergic reaction ? or even Lyme disease being the culprit ?
Does anybody else have a theory ? Fed up being labeled with I have no idea whats wrong !
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muckingfuddle
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I have had every therory from , a recent ear infection , Lymes,ms, lupus u have had almost every test possible and still no closer to what or why I have FND so now I just except I have a unknown medical condition
Hi thanks for the reply I like you have had every test under the sun and now have a whole host of letters after my name for a diagnosis like I am some professor at a university I accept the symptoms that I live with and work endlessly to make adaptions to these so that I may continue my life.What I am reluctant to accept is these letters as they all mean the same under different umbrellas there seems to be no consistency as to which you get which makes it all the more difficult for them (medical Professionals ) to find a better solution to our symptoms .
Yes so true I get you have FND Wich happenes to come with crohnic fatigue , fibromyalgia , dyspraxia and so forth. Still no closer to any answers though . All we got realy is a name to work with and it's us who have FND that realy know what we are going through .
I'm looking at FND as a description of symptoms instead of a diagnosis. The equivalent would be a GP telling a patient they had a rash but being unable to say whether it is something terribly serious like meningitis or minor like an allergy to a new washing powder. Generally medical science has got to the point where it can explain the organic cause of most rashes.
With FND you also have visible symptoms caused by an underlying disease. Likewise, FND symptoms may be quite minor and transient or serious enough to be chronic and/or life-threatening.
Given the complexity of the nervous system, symptoms could result from inflammation within the neurone, problems with neurotransmitters and the enzymes that break them down at each end, with the composition of the nerve cell or with the insulation or with the cell stimulated. Each of these may cause similar symptoms but will be at the molecular level so difficult to measure.
Hopefully, with increased research and better tools for testing at least some patients will get some answers and subsequently some effective treatment. I would describe ME/chronic fatigue syndrome in similar terms.
I agree Bunty maybe the medical professionals should look at the range of diagnosis they give with over looking conditions as they might have a clearer picture just a thought ?
After falling ill suddenly and was sent home from three hospitals with no answers I was diagnosed with FND by a doctor who specializes in this and was told that he has many patients like myself and has seen this. I felt relieved that he had seen this before and was given a book to read and a website to look at to help explain and understand more. After doing this I realized that there are many like myself all over the world. Our symptoms my differ in some ways yet I felt I my heart that something was being missed and that there was a link.
I kept searching and was lead to step out of the conventional medical. I had the Western Blot blood test done for Lyme and other tick borne illnesses. I tested positive for many things with this testing. I am thankful I kept searching. There is a lot of controversay with Lyme Disease and other tick borne illnesses and inaccuarte testing! I was tested many times in the conventional medical and was told many times it was not Lyme like so very many. The documentary "Under Our Skin" will explain in more detail about many things and I would HIGHLY recommend watching for a better understanding.
My heart goes out to each one of you and if you question there is a reason why you are. When I stepped back and listened to myself was when I was able to find answers. Remain hopeful.
Testing for Lyme can be so very tricky and I'm so glad you actually and finally got a positive result so you know what you're dealing with! It's the route I am now going to go down.
Has every single person on here that has been diagnosed with FND gotten the actual THOROUGH Lyme test done? I've had two ELISE tests done though my GP and both came back negative but 9/10 they show a false negative and not many people know this. I went back another time and the nurse had never heard of the Western Blot test!!!!!
That documentary Under our skin showed just how utterly corrupt the pharma and insurance companies are, it was sickening to watch.
EVERYONE here should go to the site Armin Labs, they are based in Germany and do the extremely sensitive EliSpot Lyme test done. This is what I am planning to do.
Or I think there is a very good California Lyme testing centre for people based in the US...they send you out the testing kit. Google it all and find out.
KEEP TRYING AND TRYING.
Lyme Disease is a tricky little bitch of a disease and loads of our symptoms are the very very same as Lyme. I have no recollection of being bitten and no recollection of any bullseye rash....50% of people don't that are diagnosed with it!!
I am glad you have decided to look into this more for yourself. Please let me know what you learn. It saddens me greatly to know so very many are suffering in many ways. For myself stepping out of the conventional medical has helped me greatly as the people I am working with now look at my whole body and are working with me to make it stronger.
As I look back thinking of the many doctors I had that looked at me and were not able to tell me what was wrong and why my body was not working correctly or actually hardly functioning at all. They would make me feel as if it were in my head. What the did not realize it that it really was. I have a infection that went past the blood barrier of my brain and effects my neurological system. I will always be thankful I listened to my inner voice and then was able to discover answers. It is a slow healing journey however I am grateful not to feel like I am climbing an uphill battle alone.
I wish you all the best and please remember that there is room for error in the testing. It is not 100 percent accurate and people the do work with Tick Borne Illnesses are able to give a clinical diagnosis along with possible testing together as they look at symptoms.
If you have any questions or want to talk please feel free to message me. Thinking of you and follow your heart. It knows the way!! Remain Hopeful!!
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