ME/CFIDS a likely diagnosis!
 

It's been awhile since I've posted here.

In the intervening time I have been fast coming to the conclusion that my diagnosis is what I feared most; not because it is a death sentence but because of medical scepticism about it's very existance. Of course the condition is ME/CFIDS/CFS/FM (which basically is an umbrella term for a cluster of documented specific symptoms with a possible number of causes, for which at this stage, there is still no laboratory proof).

One very interesting thing (among many) about ME/CFIDS is that in the supporting literature it is often called among other things, a neurological condition, ....yet...

......not once in my search of algorithms and medical papers outlining various neurological disorders and causes of peripheral neuropathy did I find any whiff of a reference to ME/CFIDS. Yet burning, tingling and abnormal peripheral sensation can be a symptom, as can fasciculations (muscle twitches). Nor too did either of the neurologists I had consultations with, after hearing my long list of symptoms, ever allude to the fact or suggest that what I may have could be ME/CFIDS as the cause.

It's quite unbelievable to me that these supposedly learned people do not even consider or have the intellectual integrity to look at the whole picture and include this scenario as a possibility. They must see numbers of people who fit this profile and are sent away empty.

I have recently sought out a doctor who has some experience with ME/CFIDS and he believes that the 23 symptoms that I have been experiencing for the past 10-12 months do fit within the documented guidelines of this elusive condition. He is now eliminating (among other things) possible causative agent antibodies which may have stimulated a heightened/lowered immune response - like Ross River Fever, Q Fever, Murray Valley Fever, mycoplasma, psitticosis, legionella etc etc.

Regardless of testing outcomes it is heartening to know that my symptoms are being validated by someone who is listening and seems to understand - at last!

ME/CFIDS (?)
First time I've ever run across it.
Never heard of it, before.

Hugs to you. Hope you can find solutions now. :hug:

I just googled and spent the last 90 minutes or so reading about this disease/disorder . . . and all I can say is I want to give you a huge cyber-hug and hope that amidst this personal hell-type of waxing and waning existence, I hope that you are allowed some real, sparkling gems of experiences to make up for the struggle each day must bring. I hope you are able to find and maintain the most effective equilibrium for your particular experience with this disabling disease, and that the stream of humanity that flows by your life includes some incredibly wonderful and sensitive people along the way.

And having just learned about this, I hope I become even more sensitive and able to interact with those who function at levels and in ways I have never imagined.

Hey Bob B. are you...
 

being facetious? (that kind of means - just kidding)!!!! :) You have to be kidding me!

....or have you really never ever heard of ME/CFIDS before? :(

I just googled it.

Here you go. They have a whole website on it.

http://wwcoco.com/cfids/what.html

I understand
 

Megan,
This disease was the first thing I was diagnosed with about 20 years ago. I struggled for almost 15 years before being diagnosed with seronegative Sjogren's Syndrome ( with neurological complications) and seronegative Rheumatoid Arthritis. I was very lucky to find a doctor who believed in my symptoms and treated me in various ways for years before finally diagnosing the Sjogren's Syndrome.

It took me another couple of years to get proof and the diagnosis that Sjogren's Syndrome was causing the neurological symptoms I have.

I hope your doctor will also consider these two diseases also with his testing. They can both lie dormant in your system, coming and going with remissions. Mine did. I tested positive for Chronic Epstein-Barr also.

Good luck to you,
Billye

Part of the problem with the whole "Chronic Fatigue" parardigm--
 

--especially from the historical perspective--is that people with many, many different kinds of symptoms were being lumped together under that diagnosis without them showing much commonlity at all on laboratory or other testing, so that the diagnostic category began to be looked at askance in medical circles, in much the same way "fibromyalgia" currently is.

For instance, for a long time, many people thought that one of the hallmarks of the chronic fatigue constellation was a re-activation of Epstein-Barr virus, as evidenced by various antibody titres. But some well-designed research showed that a large number of people who showed such "EBV re-activation" were not experiencing the symptomology of chronic fatigue, while many people WITHOUT such titre evidence were experiencing it. This certainly muddied the waters.

Recent thinking in this realm, by the way, involves a closer look at human herpes viruses 6 and 8 as underlying factors (Epstein Barr is human herpes virus 4--and all human herpes viruses are "immortalized" in the body after initial infection, waiting for an opportunity to reassert).

There is, evidently, SOMETHING going on with peiople who have symptoms of crushing fatigue, muscle and nerve pain, and the like. But there's yet to be a real "smoking gun" type of clinical/laboratory correlation that doctors can point to, and that has kept many from thinking it's a "real" condition. (My suspicion is that we're going to find that environmental toxicity/mitochondrial effects are a big factor here, as we unravel the human genome.)

I found a couple other good sites too:
 

http://www.ahummingbirdsguide.com/

http://www.cfids-me.org/marys/essays.html

I hope your new doctor gives you some relief!

Nope!
Never did. Sorry.

I think I understand....
 

your feelings and concerns, Megan.:)

I was diagnosed with CFS/ME by researchers here in the U.S over 20 years ago. I have also participated in the research over the years.

Even within research, there have been subcategories of groups. I've had researchers explain to me that there have been at least 5 subgroups. While one group might have an abundance of severe neurological symptoms, another group may be experiencing only overwhelming fatigue (which is more than enough, in and of itself). The groups in between are variations of a mix of symptomatologies between these two groups (at opposite ends of the CFS/ME spectrum).

I have been in the "group" with the "severe" neurological symptoms.

However, the researcher has been very clear in his opinion that he has felt I have had a neurological disease all along, we just have not been able to fully identify all of what has been going on.

Over time, we have identified an increasing number of autoimmune conditions. These have never explained all of the neurological problems over the years.

More recently (over the past 8 years or so), I have had increasing neurological issues, with abnormal biopsies, etc. I had been told then that I have an immune-mediated process of the CNS and the PNS. It was then we were also sure I'd had small fiber neuropathy, as well.

This year has been very tough "neurologically" and I am in the midst of having many different tests of both the peripheral and the central nervous system.
We are finding more nerve damage, with blatant EMG abnormalities, etc.
Since we are currently in the midst of testing, I cannot disclose the current full picture, as I do not yet know it. (I have had many tests for which I do not yet know the results of and have others scheduled for next week, as well.)

Right now...we are left guessing between an autoimmune process, a CIDP or a hereditary neurological illness. The EMG pattern of nerve problems looks very similar to CMT. (Ulnar nerves, peroneal nerves are currently problematic, with moderate atrophy in one hand... which will have a surgical intervention of some form as soon as possible.) I will also be having brain and spinal cord MRIs, etc., as a CNS process is also suspected at this time.

If you look as far back in CFS research as the 1980's, you will see mention of research subjects with abnormal brain SPECT exams and you will also read of many parathesias, nerve pain, etc. (Some cases were incredibly severe and blatantly "neurological" within the accounts of even the research papers and/or the various interviews with researchers throughout the history of all of CEBV/CFS/CFIDS/ME research.)

Interestingly enough, I had read a headline over the past two weeks, of a medical source, which was announcing that CIDP had been found in some patients previously diagnosed with fibromyalgia (only). I will have to search for that information again in order to give you a correct source on that. (Yet, that may have been a simple cases of misdiagnosis.)

I would encourage you to continue, as you are able to both finanacially and emotionally, and if you feel led to do so... to always try to gain more clarification than a CFS/ME diagnosis...if such is at all possible. I encourage this because a diagnosis of CFS/ME is not very helpful and if you can find out more...there may be a chance you can be helped more than if you settle on a CFS/ME diagnosis.

That being said, I hope everyone reading will understand that I mean this in an understanding and in a helpful way. I am not criticizing CFS/ME. I have seen too many people obtain this diagnosis and then... critical time passes when they actually had an underlying condition that could have been helped/intervened with much more successfully if they their doctors had not settled with the CFS/ME diagnosis.

I know it is not easy to continue the "chase" for the underlying cause(es). Sometimes, lives do depend upon this, however. For instance, I have known of a few women receiving a CFS/ME diagnosis for which they had explained all of their severe fatigue, while, in the meantime, they'd (maybe also or instead) had ovarian cancer and never realized this until it was too advanced to do anything to intervene.

Oh yes, I , too, am very surprised when someone has not heard of CFS/CFIDS/ME in 2008. However, there are so many people never having had a reason to know about this problem and there has always been a tremendous amount of resistance to public service ads, etc. (I have been involved in many of the "campaigns" to get some recognition for CFS/ME and also to have research monies "tagged" for CFS/ME and/or to "recover" CFS-designated research monies actually taken out of the research coffers and used by the CDC for other uses. The GAO had investigated this and has documented this "misallocation of research monies." This has been an uphill battle for a very long time now.) Thinking it all through, as I write, I guess I should not be so surprised afterall.

I wish you the very best and hope you can continue to get more clarity on answers/information for yourself. I'd like to see you have a really great shot at actually getting some really good help... the sooner, the better!:hug:

ME/CFIDS/CFS/FM and all the other acronyms!
 

Thankyou Deja Vu.

I am very aware of all the resistance to this term of ME/CFS/CFIDS/FM, however collectively it summarises very well a lot of symptoms, that a lot of people have. History will no doubt judge this diagnosis as primitive once specific causes for it are found ....and I believe this will happen, but for the moment all we have is this umbrella term. Perhaps it will come down to strength in numbers to force researchers to study this more closely, with no more siphoning off funds.

Very interested in the subcategories that you suggest. Any references that you have which discuss this or other pertinent aspects, I would love to read.

For me I know I have not been the same since I had a Mycoplasma Pneumoniae infection at the end of 2005, causing a terrible cough that lasted for ten months and ended with a huge 'asthma' attack in 2006 and nine days in hospital. My fatigue, neurological symptoms and numerous other symptoms did not start 'til 2007.

Two neurologists have been unable to diagnose anything.

A couple of weeks ago I saw a doctor (MD) who has additional training in Nutritional and Environmental Medicine. He ordered a Mycoplasma P. titre and a whole lot of other things - particularly viruses. The tests came back with active Mycoplasma and CMV, with a borderline Legionella titre. This doctor would like to work initially on the toxic overload being expressed as he called it through 'bugs'. So I suppose one step at a time.

I'm sorry to hear that you are having so many neuro symptoms. It's like a never ending saga to diagnosis - and for you more so! I would not call my neuro symptoms severe but they are very specific. Sometimes when I am sitting quietly and feel so sick, I think 'how can there not be an answer to this'? There must be others who are feeling this way and experiencing similar things. Yet even with a clear synopsis of 23 (mostly new in 2007) symptoms nothing 'rings a bell' for the neurologists or my GP. Just want to steer you down the path of being 'nuts' I think!

Hind sight is a wonderful thing and what we are experiencing now will one day be viewed retrospectively..... hopefully the future will provide a diagnosis and treatment!

Hey Megan!
 

I'd read (and re-read ) this thread with great interest.

I am so glad your current doctor is testing many things...and is actually finding (at least some of) the culprits! I am hopeful you can feel better than you do right now... and hopeful you might feel much better than you have for awhile... once some of these are attended to?

I do realize this may not be the whole picutre/the entire explanation for your feeling so ill!

Many docs are not eager to use CFS/ME/FM as a diagnostic label.
This is for many reasons, most of them actually helpful to the patient, in my mind. It is not helpful to give a patient a diagnosis of a (historically) chronically disabling medical condition, without much hope of much help and certainly no cure in sight! Once these types of diagnoses are documented, many lose their insurability here in the U.S. If one is disabled and loses group coverages through ongoing disability, one can rarely recover insurability... medical , life and/or disability.

Additionally, once a doc documents a diagnosis like this, many efforts to "discover more" about the illness are stopped. Many insurers withhold coverages for additional testing, for certain medications, etc., because these things have not been proven effective/helpful with CFS/ME/FM.

Therefore, the only time it is beneficial to actually give these types of diagnoses are when doing so actually helps the patient more than it hurts the patient. For example, it might help a patient when a patient needs a diagnosis in order to file for disability income and needs a diagnosis. Unless a patient really needs documentation of such a diagnosis for legal/financial purposes, it truly is not often in the patient's best long-term interest.

Additonally, even if the doctor giving the diagnosis has a fine attitude about CFS/ME/FM. S/he knows of many colleagues more than willing to discriminate against persons with this type of a diagnosis. I cannot tell you of just how many medical professionals (including docs, nurses, physical therapists, and even social workers) I have had tell me..directly... that they really do not want to deal with CFS/ME/FM patients. (Some of these knew I'd had a CFS diagnosis, others did not know when they'd told me this.) There has been a huge attitude out there that is not beneficial toward the diagnosed patient.

In these cases, some other docs (consulting specilaists) (sometimes) do not work out as well as they could, simply because some have an attitude.

Not all docs withholding a CFS/ME/FM diagnosis are doing so for reasons harmful to the patient. While they may be mostly convinced these are the right (or most correct) diagnostic "tags," they keep working diligently at finding something more helpful to their patient.

In cases of a highly motivated patient, like yourself, it is best for a doctor to discuss his/her thoughts with you, as s/he explores your case/diagnosis(es). Yet, doing this is not always advantageous with every patient.

If a doctor has truly ruled out all else known to modern medicine, then it is appropriate to give this diagnosis. This has been (historically) a diagnosis of "exclusion," even though many docs have been handing out this diagnosis very quickly and without completing full work-ups on differentials.
Some docs do not care to do all of the necessary work-ups; some admit this.

Even now, years later, with blatant neurological difficulties, I always ask a doctor , directly, if s/he is truly interested in taking on my case. Even with neuropathy, I am better off with a good (intelligent and motivated) neurologist (not referred to as a neuropathy specialist) than I am with a so-called neuropathy specialist, working with an indifferent attitude!:winky:

I had read back in your first post in this thread...soomething about"...nothing ringing a bell..." with neurologist and with your GP. I am wondering if the problem was actually the fact that many bells were ringing? This happens a lot when there are co-existing conditions. When we consider all of the symptoms (and signs) often involved, a comprehensive list of differential diagnoses must be very long?

I have a lot of hope for you, as you are very intelligent and highly motivated to find "truths." This is very important...this "drive" and you are lucky you have the intelligence to read up and to pursue the information and the help you need! (Not all are so blessed!):winky:

I have long ago dumped all of my files on CFS/ME/FM! I had a major collection... that had started in the early '80's! Most of it was on paper (in various formats), as I did not have a computer and internet access for many years!:eek: I do not have one file on any of this anymore (in any format)! If I need info. (again), I go and search it. I rarely look at this info anymore. (I have burnt out on this topic myself. I try to update my knowledge periodically, but I do not "chase it" anymore.)

The national associations usually have a comprehensive archive readily available!:D I'd just checked on this before writing this... and there they were!:D

It's important to check on information... and even on information from people with same/similar diagnoses, as we all are only human and sometimes we misunderstand something!:)

I am looking forward to having you feel even somewhat better, with the discovery and the treatment of these recent finds. I hope it will make you feel great!:D (Yet, if not, I hope it helps some!)

There is a great group of compassionate and very intelligent people here!
Many here can help you with scientific matters much more than I am able to.
Their "critical thinking abilities" trump mine!:D

I am interested in how this all goes for you!:)
Please keep in touch about this!

Thanks so much for sharing and take excellent care!:hug: