How do you know when it is 'safe' to 'give up' on doctors/testing?

[dan062]

@dan062, what actually are you symptoms, mental and physical?

I don't want to derail the thread talking about my individual condition, but I have almost everything in the long list you posted minus the extreme fatigue (I'm a little tired but nothing drastic, and it's greatly overshadowed by all the horrible neuro and other symptoms I get on a daily basis: dizziness, muscle twitches and jerks, leg weakness, heart palps).

 

[Hip]

I don't want to derail the thread talking about my individual condition, but I have almost everything in the long list you posted minus the extreme fatigue (I'm a little tired but nothing drastic, and it's greatly overshadowed by all the horrible neuro and other symptoms I get on a daily basis: dizziness, muscle twitches and jerks, leg weakness, heart palps).

I does not derail the thread if you talk about your symptoms.

In terms of the level of your fatigue: are you still working, and if so, how do you feel after you have done a day's work? Are you more mentally shattered after work than before you became ill? Do you find that you are too tired mentally to do anything in the evening after a day's work (like social pursuits or hobbies), other than just cooking and eating?

The fatigue of ME/CFS can be both mental and physical; some people (like myself) are still quite physically able (I can run a mile without too much difficulty); but mentally I can be too tired and brain fogged to read or think properly.

Did your symptoms start with any infection, by the way (like a bad flu, bad sore throat or gastrointestinal upset)?



But to answer the question that you posed in this thread: in cases of moderate to severe ME/CFS, where you can be housebound or bedbound, you can feel very much like a prisoner of this disease, because the disease locks you away from most of ordinary life. So you tend never to give up searching for some better treatments that might help you, because you would like to improve your condition so as to get back into life.

Having ME/CFS is a bit like being a prisoner of war: you feel it is your duty to try to escape your prison; it also raises the individual's morale to focus on escape plans. I think many people on ME/CFS forums are like fellow prisoner of war, who all have the same escape project in mind. And it has to be said, woking on these escape plans, ie, doing the medical reading and research, and/or going to visit ME/CFS specialists, can be in itself interesting. I knew very little about medicine and medical science before I developed ME/CFS, but started learning about it first out of necessity, and then out of interest too.

But if your ME/CFS is only mild, meaning that you have some loss of quality of life, but you are not really locked away from much of life as the more serious ME/CFS patients are, I can imagine that after some point you just may want to forget about your symptoms as much as you can, and just get on with things and with life.

Though before you make this decision, you might want to try a few of the straightforward ME/CFS treatments that many on this forum has found beneficial, as these may serve you well. I am thinking of treatments such as vitamin B12 sublinguals, methylation protocol and low-dose naltrexone, which are detailed on the forum.

In terms of considering alternative diagnoses, even after nearly 10 years with ME/CFS, I still keep an eye on alternative diagnoses, because you can never be 100% sure you have ME/CFS. A good list of diseases with very similar symptoms to ME/CFS is found here.

 

[Hip]

the horrible neuro and other symptoms I get on a daily basis: dizziness, muscle twitches and jerks, leg weakness, heart palps).

These bring to mind the condition of POTS, which has symptoms close to those of ME/CFS:
POTS - Postural Tachycardia Syndrome

 

[dan062]

I does not derail the thread if you talk about your symptoms.

In terms of the level of your fatigue: are you still working, and if so, how do you feel after you have done a day's work? Are you more mentally shattered after work than before you became ill? Do you find that you are too tired mentally to do anything in the evening after a day's work (like social pursuits or hobbies), other than just cooking and eating?

The fatigue of ME/CFS can be both mental and physical; some people (like myself) are still quite physically able (I can run a mile without too much difficulty); but mentally I can be too tired and brain fogged to read or think properly.

Did your symptoms start with any infection, by the way (like a bad flu, bad sore throat or gastrointestinal upset)?



But to answer the question that you posed in this thread: in cases of moderate to severe ME/CFS, where you can be housebound or bedbound, you can feel very much like a prisoner of this disease, because the disease locks you away from most of ordinary life. So you tend never to give up searching for some better treatments that might help you, because you would like to improve your condition so as to get back into life.

Having ME/CFS is a bit like being a prisoner of war: you feel it is your duty to try to escape your prison; it also raises the individual's morale to focus on escape plans. I think many people on ME/CFS forums are like fellow prisoner of war, who all have the same escape project in mind. And it has to be said, woking on these escape plans, ie, doing the medical reading and research, and/or going to visit ME/CFS specialists, can be in itself interesting. I knew very little about medicine and medical science before I developed ME/CFS, but started learning about it first out of necessity, and then out of interest too.

But if your ME/CFS is only mild, meaning that you have some loss of quality of life, but you are not really locked away from much of life as the more serious ME/CFS patients are, I can imagine that after some point you just may want to forget about your symptoms as much as you can, and just get on with things and with life.

Though before you make this decision, you might want to try a few of the straightforward ME/CFS treatments that many on this forum has found beneficial, as these may serve you well. I am thinking of treatments such as vitamin B12 sublinguals, methylation protocol and low-dose naltrexone, which are detailed on the forum.

In terms of considering alternative diagnoses, even after nearly 10 years with ME/CFS, I still keep an eye on alternative diagnoses, because you can never be 100% sure you have ME/CFS. A good list of diseases with very similar symptoms to ME/CFS is found here.

Thanks, @Hip. It was more out of concern for others that might want to weight in on how they've 'moved 'on' that I didn't want to go off in a tangent.

I understand how severe cases can get. In my case, I felt terrible enough that I did give up a job (I'm starting a new position next month), but more because I felt I needed a few months to deal with this (explore further diagnostics and treatments) than because I felt I couldn't continue in my position.

That being said, I haven't made a lot of progress -- either with the medical hunt or with symptoms. I've just had plenty of time I'm not sure I'll have again to go through the various things that could help my condition, without actually putting any into practice. But I feel glad that I have the info.

I think we'd be in a similar situation. I will never accept feeling 60% of my former self, even if I'm also not house or bed bound. But I would be happy to move away from the hunt for a different diagnosis than CFS/ME once I've done a bit more testing (I'd still like a neuromuscular workup for the RF and CK).

Yup. Everything began following a sore throat. The classic presentation with dizziness, photophobia, tinnitus, 'what the hell is happening to me?' kind of feeling, etc. But there was leg weakness for a couple of months prior. However, I've heard from other members that a slightly staged onset, like this, isn't altogether atypical.

I

 

[heapsreal]

I guess i had ruled out enough things but also had plenty of test results common with cfs/me, as well as symptoms.

I was also a classic case of herpes virus onset with cmv/chickenpox/ebv within 6 months and i have responded to antivirals.

Immune tests show abnormalities but nothing to put me in a specific class of immune disorder. I had/have total elevated lymphocytes and lymphocyte subsets, neutropenia from mild to moderate, immunoglobulin subclasses slightly above normal, cmv titres high enough to consider it reactivating, this test was done while on antivirals for a few months. Also have the low nk function testing with multiple tests over 18months showing low nk function. Also adrenal fatigue/dysfunction with low normal morning cortisol and below normal dhea levels. Also a low free testosterone levels show up consistently over the last few years i have had it tested. Chronic sinusitis probably bacterial as respond to abx but returns once i stop abx and ct scan shows inflammation in the sinuses. low vit D, had a couple of tests for inflammation like CRP come back high, celiac disease- told neg but have an intolerance to gluten. I treat all these abnormalities the best i can?

I was neg to herpes type 1/2/hhv6, chlamydia pnuemonia, mycoplasma, negative to a couple of other bacterial infections common to ticks here in australia. b12 iron etc are normal, Haemochromitosis neg(father had this),ANA normal, neg to sjogrens, I had a lymphocyte function test come back as normal which was strange as my nk function was very low but it was dont at a research lab not a commercial lab like the lymphocyte function test. I have had a couple of positive igg ebv results early in my cfs but later igg is neg to ebv, neg to candida and another fungal infection i cant recall, neg hepB/C, HIV, neg to parvo, Q fever neg, ross river virus neg,

So i have had a lot of testing, i guess if i was to be diagnosed with something it would be,
cfs/me with chronic lymphocytosis, low nk function, neutropenia and cmv reactivation and chronic bacterial sinusitis.

I would like to get the coxsackie testing done, biopsy would be great. Cytokine testing, RnaseL, lyme, MRI, Tilt table test, 2 day exercise test, stool testing,

Another point i would like to make is some tests i would like to have done a couple of times a year, mostly the nk function and other immune tests.

So i have had alot of testing done, looks like alot more after typing it out compared to what i had pictured in my mind.

I know everyone is different but my initial onset with herpes viruses did help steer me in the right direction?

 

[Hip]

Yup. Everything began following a sore throat. The classic presentation with dizziness, photophobia, tinnitus, 'what the hell is happening to me?' kind of feeling, etc. But there was leg weakness for a couple of months prior. However, I've heard from other members that a slightly staged onset, like this, isn't altogether atypical.

So that sore throat was quite likely the moment you caught the virus that precipitated your presumed ME/CFS. Though if you say your leg weakness began some months prior to catching that virus, it suggests that there may be another cause for these leg symptoms.

Either that, or you caught the some months virus earlier, and the sore throat took a few months to appear.

I noticed that with the virus I caught, as it spread to my friends and family, when each new person caught my virus, the prodrome symptoms would generally start with either a sore throat, or a gastric upset with vomiting. (The prodrome is the symptoms produced when a new infection first enters the body). But I noticed that when the infection would start with a gastric upset, then some weeks or months later, the virus would hit the throat of that same person, and cause a bad sore throat (that took many weeks to clear up, and in several people never quite went away).


Did you have any other symptoms apart from leg weakness prior to getting your sore throat?

 

[Strawberry]

I give up on doctors and tests all the time! And then I give up on being sick and the continual downward spiral, and go back to testing. But "SAFE" is an interesting concept. What is safe? CFS isn't considered real by 90% (pulled that number out of my ear) of doctors, so do testing until you are certain you don't have something that could rapidly deteriorate your health. I know now I don't have lupus, and MS is partly ruled out. So I don't think my organs would fail any time soon. I will keep asking questions, and seeking answers, and keep trying to help myself while the medical field catches up. And take time outs when I get sick of doctors stealing my blood!

 

[dan062]

Did you have any other symptoms apart from leg weakness prior to getting your sore throat?

I was uncharacteristically tired during that period, but I didn't make much of it. In retrospect, I certainly think it counts as a prodrome. Just possibly a different type of one than what you're describing (which may possibly be due to a different route of entry for the infection -- leg abrasion vs GI bug?).

 

[dan062]

Do testing until you are certain you don't have something that could rapidly deteriorate your health.

I think that's an excellent yardstick to go by. And I guess when I think about it, there's nothing potentially imminently life threatening that could have been missed in probably any of our work-ups.

(And I guess on the other side of the coin, why sweat the potentially serious more chronic stuff that still may have been missed. It is what it is and worrying won't change anything.)

 

[Apple]

I've been sick for almost 10 years and will not stop searching.

I've had lots of difficulties getting help/tests over the years for various reasons (was totally housebound for the first 5 years with no medical care and am still mostly housebound now. I also suffer from medical anxiety, have had many lazy/shitty doctors, unsupportive family, dead ends, plus not really knowing where to go and what to do).

I see ME/CFS as a label, not a diagnosis. There is always an underlying issue. The moment I decide stop searching is the moment that I give up on life. And I refuse to give up. I will find my answer and I will get better.

Please do not just back down and accept this diagnosis. There are a 1001 other possibilities.

 

[Tired of being sick]

@dan062
I did not answer because the day I give up will be the day I die........

I am basically "my own PCP" so I get just about every lab test/MRI/CT scan/sonar/xray ETC that I suspect,
eventually, out of sheer persistence..
Right now I am working on getting every vascular screening test known to man TO GET TO THE BOTTOM OF EVERY BLOOD FLOW/VOLUME PROBLEMS I HAVE ASSOCIATED WITH POTS.
Such as:
Vascular Disease Screening and Prevention - New York ...
Carotid Duplex: This ultrasound procedure can detect carotid artery disease – blood clots, plaque build up, and other blood flow problems in the carotid arteries – early, before it causes any symptoms. When the disease is detected early vascular specialists can perform procedures that are effective in preventing stroke.

Aorta Ultrasound Scan: An aorta ultrasound exam can diagnose aneurysms that develop in the abdominal aorta, and is used to follow patients who have undergone procedures including aortic endograft and aortic open repair aneurysm.

Arterial Duplex Imaging: Using this high-frequency ultrasound test vascular specialists can visualize the arteries in the legs and the velocity and direction of blood flow in those arteries.

Treadmill Exercise Testing for Claudication: Doctors use treadmill testing to detect peripheral artery disease in patients who have pain in their lower limbs (claudication). During a treadmill test they can evaluate how exercise affects ankle-level blood pressure and analyze the relationship between claudication and vascular function.

Digital Photoplethysmography (PPG) with Thermal Measurement: Digital photoplethysmography (PPG) is an imaging test used to detect changes in blood flow at the microvascular level in the fingers and toes in people with Raynauds disease.

Ankle Brachial Index (ABI) with Pulse Volume Recordings (PVR): Doctors use these tests to measure blood flow and detect arterial blockages in the arms and legs. Together the tests help determine the presence, severity, and location of peripheral arterial occlusive disease.

Renal Artery Duplex Scanning: This imaging test evaluates blood-flow velocity and patterns in the aorta and renal arteries to help diagnose and locate blockages in the vessels and damage to the kidneys from chronically poor blood flow.

Dialysis Access Evaluation: This ultrasound exam helps vascular specialists map veins and determine which can be used for hemodialysis access.

Thoracic Outlet Obstruction Evaluation: Doctors use a combination of imaging studies including chest x rays, CT scans (in some cases with 3-dimensional reconstruction to show compression of the structures at the thoracic outlet), angiography and venography, MRI, ultrasonography, electromyography (EMG), and nerve conduction studies to diagnose thoracic outlets obstructions and determine the most effective treatment.

Vein Mapping for Arterial Bypass: Before performing surgery to perform a bypass, surgeons use preoperative ultrasound imaging to determine which vein segments might be used for bypass grafts.

Venous Ultrasound Scan of the Upper and Lower Extremities: This ultrasound exam shows blood flowing through blood vessels and can be used to detect deep vein thrombosis (DVT) and superficial vein thrombosis (SVT).

Diagnostic Tools and Technology
Diagnostic Angiography: Angiography is a type of imaging test that allows doctors to view blood vessels throughout the body and diagnose blockages, enlargements, clots, and malformations. An angiogram to study the arteries is called an arteriogram; one to study the veins is called a venogram.

CT Scans: A computed tomography (CT or CAT) scan is a noninvasive imaging test in which computers combine special x-ray images to produce cross-sectional images of internal organs, bone, soft tissue and blood vessels, allowing radiologists to diagnose vascular problems.

TeraRecon/Aquarius: This new technology allows vascular specialists who are planning an endovascular stent graft repair of an aortic aneurysm to create and analyze a three-dimensional reconstruction of a computed tomography angiogram. These images help ensure proper sizing and placement of the graft.

MRI: Magnetic resonance imaging (MRI) uses a powerful magnetic field, radio frequency pulses, and a computer to produce detailed pictures of organs, soft tissues, bone and virtually all other internal body structures. Detailed MR images allow physicians to better evaluate various parts of the body and certain diseases that may not be assessed adequately with other imaging methods such as x-ray, ultrasound or computed tomography (also called CT or CAT scanning).

Zeego: Specialists at NewYork-Presbyterian now use a new vascular imaging system (Zeego) that employs X-ray technology to image blood vessels. This angiography system allows doctors to move a C-shaped arm to almost any position around the patient, and to visualize internal organs from all sides.

Dyna CT: This new system allows vascular specialists to create CT-like images of soft tissue, and enables them to differentiate between normal and abnormal tissue to visualize, for example, brain tissue and intracranial hemorrhages.

 

[Gingergrrl]

I did not answer because the day I give up will be the day I die........

@Tired of being sick

 

[dan062]

@dan062
I did not answer because the day I give up will be the day I die

I like your attitude. Perhaps 'how do you know when it is safe to defer or postpone further testing' would have been a better wording for the poll.

It seems as if most commonly, people simply run out of money or feel that doctors will never get to the bottom of things before they do (I think this is the implied judgment of people that get fed up with the docs). But they never just give up.

 

[Tired of being sick]

I like your attitude. Perhaps 'how do you know when it is safe to defer or postpone further testing' would have been a better wording for the poll.

It seems as if most commonly, people simply run out of money or feel that doctors will never get to the bottom of things before they do (I think this is the implied judgment of people that get fed up with the docs). But they never just give up.

I'm fighting for disability(3 years now) in which this truly unfair SSD SSI system is throwing every type of WILD pitch they can possibly come up with,banking on these pitches till either I die or give up.........

However I'm turning their unfair cruel actions into positives for me for the fact I will have UNLIMITED free
health care until they either award me with SSD/SSI (that is rightfully mine to begin with as myself and my family roots payed into this "insurance""system life long)or I get well enough to support myself..

 

[Sea]

A study was done several years ago involving, if I remember correctly, around 300 people with a diagnosis of cfs. I can't remember by which criteria they were diagnosed, I don't think it was one of the more well defined ones. Those people underwent extensive testing and around 40% were found to have an alternative (and often treatable) explanation for their symptoms. Keeping that in mind I would never settle for a diagnosis of cfs without proper testing being done. The frustration for many is the lack of finances or accessibility to do this testing.