M.E.

[Tewa]

My research has led me to The Hummingbirds' Foundation for M.E. Myalgic Encephalomyelitis. My neurologist gave me a print-out when I was Diagnosed with FND. I suppose he wanted to include ME and CFS, without making a distinction between FND, M.E. and CFS?

After reading the extensive information on this site, I am thinking that FND is a misleading misdiagnosis, open to interpretation to include a psychological based disorder. Please read and see what you think. The symptoms described are what I experience. M/E. is not merely a symptom,., but instead a distinct disease. It has been recognized by the World Health Organization(WHO)since 1969 as a distinct organic neurological disease with the code G93.3. M.E. is a systemic acutely acquired illness initiated by a virus infection which is characterized by damage to the brain stem which results in dysfunctions and damage to many of the body's vital systems and a loss of normal bodily functions.

M.E. is primarily neurological, but symptoms may also be manifested by cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. More than 64 distinct symptoms have been authentically documented in M.E., several which are distinct to the disease.

As much as I am not desiring a diagnosis of this, or nay other neurological disorder, this one fits. particularly with the symptom description and the on-set, which is always sudden. And...exercise always makes this condition worse and can have harmful effects. I cannot put in this post all of the helpful information on this site..it is too lengthy. Please consider reading it . Hopefully it will be of help.

When I return for my appointment with my neurologist in three or four months, I will discuss this information with my neurologist and see what happens.

[malalatete]

If you are in the UK there are dedicated ME services in some area which are best placed to give you this diagnosis and provide support to manage the condition. Historically a lot of neurologists have assumed ME was functional (for which read somatoform) but current research is showing a strong likelihood for a biological basis.

I have a dual diagnosis so can say the one affects the other. They are similar, but both need proper diagnosis

[Tewa in reply to malalatete]

Thank you for your response. I am in the states. The research I read do not attribute M.E. to being functional.

[Tewa in reply to Tewa]

Linking M.E. to a virus or exposure to a chemical. I was exposed to a potent neuro-toxin bug spray.

[Lawley3 in reply to Tewa]

Hi Johanna,

Your post makes interesting reading as I too say most of my symptoms are similar to m.e. I spoke to my neurologist about this before Christmas and he said to me that I definitely have a functional neurological disturbance going on and if it is m.e then that is a functional illness also and comes under the whole umbrella of fnd. But like you I have read otherwise that evidence is now showing this to be organic. My illness was triggered by a virus I had whilst pregnant with my daughter and I have been left with many symptoms affecting so many different things e.g hormonal, cardiac, respiratory, neurological, intolerances etc but the doctors have not found any organic illness and have said it is fnd. I am still unsure but have had to accept this. I am currently awaiting another opinion with a neurologist in Birmingham.

Best wishes to you all

Louise x

[malalatete in reply to Tewa]

No, neither did I. As I said there is lots of research which is beginning to show a biological basis.

If you are thinking your symptoms are as a result of neuro-toxic chemicals then look at the work of Prof. Malcolm Hooper of MERUK and you will find that interesting.

Also suggest you log into Phoenix Rising, the US ME patient forum, if you want to know more about how to access specialist centres and be properly diagnosed.

If you think you may have ME it is important to be properly diagnosed by someone who specialises in it (preferably someone working with the Canadian consensus definition, not Fukuda) (a) because if you have ME you need the support of such a specialist, (b) because your average neurologist is unlikely to have much understanding of the condition and (c) because it is important for ME that it is well diagnosed as its symptoms are easily mixed up with a whole lot of other disorders and many clinicians see it as a convenient parking lot for chrinically ill patients they don't know what else to do with.

Best of luck

[Tewa in reply to malalatete]

Thank for for all of this very helpful information. I have been googling to locate a ME specialist in Virginia, where I live. No success. I will go to the US ME patient forum as you suggested.

As kind and supportive as my neurologist has been so far, I don't think he knows enough about ME. I will be speaking to him this coming week. One of the issues I will address is the now constant tachycardia, accompanied by pain, especially at night My BP goes up, headache increases as well as muscle pain and spasms. I read yesterday that this is a component of ME. As I read the symptoms of ME, and how life becomes so limited with progression and increasing weakness on exertion...I felt like I was reading about my life as it has now become. I will mention to my neurologist that ME has been diagnosed as a neurological disorder by the World Health Organization with a diagnostic code. The severity of this illness and how it impacts on quality of life is daunting.

Best to you.

[Tewa]

Conversation yesterday with my neurologist. I do have ME. And a FND disorder. He said functional does not mean psychologically based illness. I let him know that many are still equating functional in that context. He seemed surprised and said for the last 20 years the docs have know it does not mean psychological. Obviously he is more forward thinking.

I had an MRI of my lower back a week and a half ago. Finding abnormal and my PCP is referring me to a neuro-surgeon. I have an appt with her tomorrow so will see what this means. Also scheduled for a stress test on Thursday. With ME, this chemically induced test can cause such severe pain that the test may have to be stopped. Her nurse is giving her this info info and I will discuss with her tomorrow.

All very discouraging and daunting. As my life narrows down with having to curtail activities I so enjoyed before, I ask myself how to manage and have joy in life, in spite of this?