Another Post-Viral Diagnosis

[SeanQHX1]

Hi everyone again.

I just seen a neurologist and PVFS/ME/CFS specialist recently in the UK and the consultation went as well as it could have I will say. The doctor was very approachable, spent a good hour with me and was very thorough with his questions and observations.

As some of you may know from my previous posts, I've spent over 5 years trying to get to the bottom of some kind of post-infectious illness, resulting in steadily worsening brain symptoms that have left me more or less mentally incapacitated.

The neuro I seen thinks that I have some kind of post-viral fatigue that causes only cognitive fatigue, but not the physical kind. And we agreed that it's not ME/CFS. While this isn't really a step forward trying to get answers and treatment, at least we're going back to aknowledging it as a post-viral illness. And this should hopefully keep my NHS doctors from trying to shoehorn a somatic or functional diagnosis as they have been doing for years.

I'm rather dubious however about him suggesting CBT, antidepressants (Sertraline) and mindfullness apps. And he seems under the impression that my symptoms can fluctuate and will improve. This just feels like I'm being given false hope as I've not had a single improvement in my symptoms from the onset of this illness, nothing seems to aggravate or alliviate my symptoms in any way and it feels more like a degenerative condition as opposed to anything along the lines of CFS. Besides this though, it was at least good to finally be listened to by a doctor after 5 years of being ignored and gaslighted.

I'll do what he suggests in the meantime, but given the nature of my illness, I'll continue looking for answers.

 

[BrightCandle]

None of those treatments is likely to help you, if anything the Sertraline is more than likely going to do harm. This doctor just marked you as depressed but was unwilling to tell you that knowing you wouldn't accept it. They moved straight to the standard treatment plan for those who are mentally ill. Run away and don't go back. These are the worst type, two faced ones who will take your money and tell you what you want to hear but still treat you like a patient with depression.

If he genuinely thought post viral he would have run blood tests looking for the viral culprit and given a positive sign of something started you on an anti viral. CBT and Sertraline are not an accepted treatment for a post viral condition in any reasonable place in the world.

 

[SeanQHX1]

None of those treatments is likely to help you, if anything the Sertraline is more than likely going to do harm. This doctor just marked you as depressed but was unwilling to tell you that knowing you wouldn't accept it. They moved straight to the standard treatment plan for those who are mentally ill. Run away and don't go back. These are the worst type, two faced ones who will take your money and tell you what you want to hear but still treat you like a patient with depression.

If he genuinely through post viral he would have run blood tests looking for the viral culprit and given a positive sign of something started you on an anti viral. CBT and Sertraline are not an accepted treatment for a post viral condition in any reasonable place in the world.

Yep, I thought the idea of CBT and antidepressants seemed dubious, especially coming from an ME/CFS expert. He seemed very well informed about post-viral conditions when I spoke to him, but if he's just offering antidepressants and going with the treatment plan for depression, it says a lot really.

The only reason I would take these antidepressants or CBT would just be to prove my point that they don't work and that my illness will just continue getting worse. If I do what he says though, I worry that he will just give me stronger antidepressants and possibly just blame me for making my illness worse I reckon.

And I was wondering about the lack of any testing myself. He just assumed I had all the correct blood tests (the standard ones the NHS give you) previously and went with my old doctor's opinion that it was post-viral fatigue, which was just a label thrown on me without any tests at the start. I don't get how a doctor can make a diagnosis with "post-viral" in it's title without any positive findings that there even was a virus (it could well have been a bacterial infection, perhaps Lyme or one of it's co-infections). If I remember, the neurologist said something along the lines of "whatever it is you caught from the dirty tap water or toilets at the festival, I'm sure it is post-viral fatigue". So I must agree, that isn't exactly thorough.

While he said the doctors throwing somatic and functional labels around were talking nonsense, I kind of felt like he was ironically shoehorning me into a post-viral fatigue diagnosis by referring to my brain issues as "cognitive fatigue" and claiming that my symptoms were of a relapsing/remitting nature rather than a progressive one. And when I asked him about why my symptoms were getting worse, he didn't seem to have an answer and continued going on about how my symptoms supposedly fluctuate and improve.

Hopefully he hasn't completely lied and at least aknowldeges that I have a possible post-viral condition on his report instead of just saying I'm just depressed (this would be music to the NHS's ears I'm sure). Regardless of what he had to say, I'll keep looking for answers and hopefully get some real medical evidence that can validate my symptoms to doctors.

 

[Hip]

I have some kind of post-viral fatigue that causes only cognitive fatigue, but not the physical kind. And we agreed that it's not ME/CFS.

Apart from the lack of physical fatigue, do you satisfy the Canadian consensus criteria criteria for ME/CFS?

Note that the later evolution of the CCC, the ICC, do not even require fatigue to be a symptom of ME/CFS, so you may well satisfy the ICC even without having any physical fatigue.

 

[SeanQHX1]

Apart from the lack of physical fatigue, do you satisfy the Canadian consensus criteria criteria for ME/CFS?

Note that the later evolution of the CCC, the ICC, do not even require fatigue to be a symptom of ME/CFS, so you may well satisfy the ICC even without having any physical fatigue.

I don't have PEM as a symptom, mental or physical, so I think it's safe to say I don't meet the criteria for actual ME/CFS. My condition, compaired to this, just steadily gets worse with time and if there's any fluctuations at all, they are very mild. The sleep dysfunction is probably the closest thing on the criteria that I have that resembles ME/CFS I'd say.

The doctor I seen is calling it post-viral fatigue, but don't get how this can still be a diagnosis when you've had it for over 5 years. After 6 months is generally when a diagnosis of ME/CFS is made.

 

[hapl808]

I think there are lots of post viral sequelae that we don't understand; Long Covid has made that pretty clear.

My problems started after getting sick while traveling in SE Asia. For the first several years, I don't recall PEM as a symptom. It was more physical exhaustion (rather than mental) and exercise intolerance (which I stupidly kept trying to push through). I don't recall specific PEM-like effects until many years later which then were triggered only by physical activity. And over a decade after that, now my PEM is triggered by any mental activity.

But I didn't track my symptoms and supplements as carefully at the beginning, so certain PEM symptoms (especially those that were delayed 1-2 full days) may have just been attributed to food reactions.

Definitely wish I knew as much then, as I likely could've at least stayed mild-moderate and not ended up severe.

 

[vision blue]

To try to document cognitive decline, can you ask for an assessment to see if you have officially Mild Cognitive Dysfunction? Even if your cog performance is currently too high to be in this category, by getting the battery of tests now, you will at least have a baseline. Then a year from now you can retake the tests and see if theres a decline. If yes, youve documented it and if not, grear news

Im not defending the neuro, and im sympatico with @BrightCandle candle in general that the two-faced docs are the worst!! (On that, seeing if his written notes agree with his spoken words provides a good bit of data) , but note that these days antidepressants are prescribed for many things so that in itself isnt proof he is treating you as if depressed

In terms of not ordering blood tests for viruses, thats not really The neuros black bag. Instead, their test tools are: MRI, ct, EEG, EMG, spinal tap, sleep study, reflex testing, cranial abd otger nerve testing, balance testing, muscle tone assessment, neuropsych tests. And not all neuros do each test. If you feel you are not getting one or more of these that woukd be of use, maybe you can ask. (These days some neuros do order antibody tests for neural auto antibodies and they'll mindlessley do a sed rate if vasculirus of giant arteries suspected but the blood work is very limited and not all neuros are comfortable with this)

I should add that problem with the neuropsych battery of tests is obe can have significant decline but have it not show up because they do t know how smart you were becore you got sick!! Tgats why starting and taking a baseline as soon as possible

For me my cog decline only seemed to start a few years ago, at least in a general way, with a recurrent virus even tho i likely had cfs for nany tears (and not just AI dsease)

By the way, i hate MDs and the system so much i cant even say it anymore.

 

[Hip]

The doctor I seen is calling it post-viral fatigue, but don't get how this can still be a diagnosis when you've had it for over 5 years. After 6 months is generally when a diagnosis of ME/CFS is made.

I just took the symptoms you listed in this post, and entered these into Symptoma, an online AI diagnostic tool.

I entered these symptoms as describing your illness:

fatigue, brain fog, headaches, heart palpitations, insomnia, joint stiffness, anhedonia, bloated stomach, frequent urination during night, thirst, fasciculations, chest pain, dizziness, tinnitus, paresthesias in hands and feet.

Symptoma then suggested you might have these disease possibilities:

Chronic Fatigue Syndrome
Hypoparathyroidism
Anxiety Disorder
Fibromyalgia
Panic Disorder
Dysautonomia
Fabry Disease
Electrolyte Imbalance
Autonomic Nervous System Disorder
Lyme Disease
Acute Amphetamine Intoxication
Mercury Poisoning
Magnesium Deficiency
Hereditary ATTR Amyloidosis
Hypotension
Orthostatic Intolerance due to NET Deficiency
Heavy Metal Poisoning
Benzodiazepine Withdrawal
Neurocirculatory Asthenia
Polycythemia Vera
Alcohol Withdrawal
Lyme Carditis
Fluoride Poisoning
Chronic Anxiety
Irritable Bowel Syndrome
Caffeine Withdrawal
Mycoplasma Infection
Psychosis
Acute Mountain Sickness
Altitude Sickness

If you click on the disease possibilities link above, you can get more detail about each of these diseases from Symptoma.

If you click on this link, you see that Symptoma is also asking you more questions, such as "Do you have nausea?" to get more information, so you might like to answer those questions.

It may be worth playing around with Symptoma, and adding different names for your symptoms (maybe using more precise medical names where possible), and seeing what disease ideas Symptoma comes up with.

 

[Crux]

Calcium deficiency or hypocalcemia can cause most of these symptoms.

https://www.ncbi.nlm.nih.gov/books/NBK279022/

Mental status

• Confusion
• Disorientation
• Psychosis
• Fatigue
• Anxiety
• Poor memory
• Reduced concentration

Neuromuscular irritability

• Chvostek's sign
• Trousseau's sign
• Paresthesias
• Tetany
• Seizures (focal, petit mal, grand mal)
• Muscle cramps
• Muscle weakness
• Laryngospasm
• Bronchospasm

The list is vast in this article, but it doesn't include insomnia. Other articles do though;

https://www.medicalnewstoday.com/articles/321865

Extreme fatigue
Low levels of calcium can cause extreme fatigue, which involves a lack of energy and an overall feeling of sluggishness. It can also lead to insomnia.

More extreme sensations may indicate a more severe deficiency, which can also lead toTrusted Source:

• convulsions
• arrhythmias
• death

 

[BrightCandle]

It may be worth playing around with Symptoma, and adding different names for your symptoms (maybe using more precise medical names where possible), and seeing what disease ideas Symptoma comes up with.

Its a sad state of affairs that this is often better than seeing a doctor about a diagnosis. Its a damning review of the medical institutions. Its even more damning they don't even follow their own guidelines for positive diagnosis and just stick a label on you for something they can't treat, its mighty convenient. There is a reason why medical negligence payouts are climbing fast in the UK.

 

[YippeeKi YOW !!]

I'm rather dubious however about him suggesting CBT, antidepressants (Sertraline) and mindfullness apps. And he seems under the impression that my symptoms can fluctuate and will improve.

None of those treatments is likely to help you, if anything the Sertraline is more than likely going to do harm. This doctor just marked you as depressed but was unwilling to tell you that knowing you wouldn't accept it. They moved straight to the standard treatment plan for those who are mentally ill.

I completely agree with @BrightCandle .... this is the usual bullshite response to ME/CFS from Drs who are clueless, and I strongly question your Drs assertion of expertise in ME/CFS and his credentials in this area ....

These are the worst type, two faced ones who will take your money and tell you what you want to hear but still treat you like a patient with depression.

Again, couldnt agree more. But if @SeanQHX1 wants to give the sertraline a whirl and is willing to take the chance that instead of doing nothing it might aggravate some of his symptoms, it could possibly give him a less arbitrary hearing from his Dr .... but given the nature of his approach to the symptoms, I wouldn't wait for that response in a cold, drafty hall ....

Yep, I thought the idea of CBT and antidepressants seemed dubious, especially coming from an ME/CFS expert.

Yeah, again, agree. It's the standard response you expect from non-ME savvy Drs who want to do something, but don't want to include research and a better understanding of ME in that, so revert to the standard default prescription for anti-d's, whose usefulness or appropriateness as a medical response is hard to disprove ....

note that these days antidepressants are prescribed for many things so that in itself isnt proof he is treating you as if depressed

They seem to be the default prescription for pretty much any set of symptoms you can tale to an uninspired, disinterested Dr. They're hard to fault, harder to prove inappropriate, and I'm sure that BigPharm is appropriately grateful .....

 

[Hip]

Its a sad state of affairs that this is often better than seeing a doctor about a diagnosis. Its a damning review of the medical institutions. Its even more damning they don't even follow their own guidelines for positive diagnosis and just stick a label on you for something they can't treat, its mighty convenient. There is a reason why medical negligence payouts are climbing fast in the UK.

The problem is that medical diagnosis is difficult. No matter how talented you are as a doctor, you are dealing with an intrinsically difficult task.

I saw one study which found that even for regular chronic diseases, something like 20% of patients initially get a wrong diagnosis when they present with their symptoms. Later those errors may be corrected, but it is not uncommon for first diagnosis to be wrong. That shows you that diagnosis is difficult.


Nowadays, the general public has all the medical information it wants at its fingertips, thanks to the Internet. And people on this forum are particularly well versed in ME/CFS and related diseases, and may know more than their doctors as far as the sphere of ME/CFS is concerned. Yet nobody here can offer any help to @SeanQHX1 either. So that makes us look pretty bad too.

 

[YippeeKi YOW !!]

Nowadays, the general public has all the medical information it wants at its fingertips, thanks to the Internet.

Yeah. It's too bad that the medical community is excluded from that info ..... oh, wait. They're ot. They just dont bother ....

The problem is that medical diagnosis is difficult. No matter how talented you are as a doctor, you are dealing with an intrinsically difficult task.

Which is why the education and training to become a Dr are so long, so arduous, and so demanding, and includes several years of hands-on training as interns and residents. You know, to hone those classroom skills into something more workable in, and relevant to, the RealWorld ....

I saw one study which found that even for regular chronic diseases, something like 20% of patients initially get a wrong diagnosis when they present with their symptoms.

I think that estimate is waaaaay too low ....

That shows you that diagnosis is difficult.

Which is why we go to highly trained, experienced, high-paid professionals to help us ....

And people on this forum are particularly well versed in ME/CFS and related diseases, and may know more than their doctors as far as the sphere of ME/CFS is concerned. Yet nobody here can offer any help to @SeanQHX1 either.

I think several of the psters here did a better job than " .... nobody here can offer any help....", youself included ....

So that makes us look pretty bad too.

Actually, no. It doesn't.

We don't propose ourselves as highly trained, expensive, experienced professional experts, and we charge ZIP for our experiential input, which often exceeds in both practicality and results what the 'professionals' almost invariable default to: anti-d's, ABX's, CBT, 'mindfulness', GET, and experimental use of low-dose anti-psychotics ....

 

[Hip]

Actually, no. It doesn't.

I am talking about being able to provide speculative diagnostic ideas to anyone on this forum who has some unusual presentation of symptoms. I don't mean those with regular ME/CFS, which is relatively easy for members to self-diagnose with the help of the CCC and other criteria.

I cannot remember any case of an unusual presentation of symptoms on this forum that was solved by a forum member. The notable exception being Jeff Wood's discovery of his own craniocervical instability (but then he did a medical degree, so is not your usual PR member).

These things are really difficult.

Which is why we go to highly trained, experienced, high-paid professionals to help us ....

Having highly-trained highly-paid professionals is no guarantee of results when you face a hard problem.

Solving nuclear fusion is a difficult task, and highly trained, experienced professionals have been working on it since the 1950s; but the problem is still not yet cracked.

Likewise, the problem of accurate and timely diagnosis is not yet cracked. I expect in 500 years though, disease diagnosis will be far more advanced.

 

[YippeeKi YOW !!]

I cannot remember any case of an unusual presentation of symptoms on this forum that was solved by a forum member.

Perhaps not solved, but in several cases that I've come across in the threads here, greatly ameliorated, or even just modestly ameliorate4d, something that the Drs involved couldn;t achieve .....

The notable exception being Jeff Wood's discovery of his own craniocervical instability (but then he did a medical degree, so is not your usual PR member).

It's surprizing how many of the members here are medical professionals of one sort or another .... researchers, biochemists, etc. Hardly ill-educated laymen, tho not exactly medical experts ....

These things are really difficult.

Doctors are supposed to be the experts in the " .... really difficult ...", that's why we go to them. We can handle the small stuff, the sniffles, the bad kitchen burn, the scraps and cuts. It's the more difficult stuff that Drs are PAID to deal with ....

Having highly-trained highly-paid professionals is no guarantee of results when you face a hard problem.

How hard is it to diagnose stage 3 cancer, with incredibly obvious, textbook, symptoms? I should think it to be pretty elementary, and yet 5 Drs dismissed it for 2 years, giving a head-start to an aggresive, systemic cancer that was inches away from metastisizing and terminating any hope for successful treatment.

Likewise, the problem of accurate and timely diagnosis is not yet cracked.

That depends on the quality, intelligence, and diligence of the Dr involved, all of which seem to be in short supply ...

I expect in 500 years though, disease diagnosis will be far more advanced.

..... well, I wont wait standing up ....

 

[Rufous McKinney]

I think the system of a typical doctors office- and how they operate....something is up there.

My doctor is atypical, totally not normal. There isn't even a nurse. Its just Shiela who runs everything knows everything. Paper files. NO waits. hour long appointments.

So when exactly do you do all this followup thinking, and reading and considering and diagnosing? When do you do all this keeping up with the latest.

My doctor has his book he writes, then he writes new editions thereof.

If you see patients from 9 am to 5 pm, when do these other things occur? Maybe in the morning for an hour?

but he also has to call the insurer and deal with those SIX transfers to be denied the Pill.

Mine sees alot of old ones in rest homes, too. Squeezes in trips to see them.

 

[Hip]

Personally I am in awe of doctors. I see every diagnosis they make as almost a mini work of genius, especially the more difficult diagnoses. If diagnosis were easy, we would have replaced doctors with computers. After all, we now have computers which can drive cars. We even have computers which beat grand masters at chess. But computers so far have not been able to match the diagnostic abilities of a doctor.

 

[hapl808]

If diagnosis were easy, we would have replaced doctors with computers. After all, we now have computers which can drive cars. We even have computers which beat grand masters at chess. But computers so far have not been able to match the diagnostic abilities of a doctor.

Is this true? Have computers been put up against doctors in controlled environments? I tried the 'Symptoma' you recommended earlier and it immediately came up with CFS at the top of the chart and POTS second. In my journey of 30+ doctors at some of the most respected institutions in America, not one doctor said 'sounds like CFS' even though I was already aware of the disease. The closest was a naturopath I specifically saw for CFS/lyme/etc who basically just gave me the treatments I asked for. The 'best' doctors gave me honest shrugs, and others gave me nothing useful other than lots of tests for MD, ALS, spondyloarthropathy, arthritis, thyroid issues, vitamin deficiencies, and on and on. World renowned ID specialists just said, "That's not how viruses work." when I described the onset in a tropical region.

Also, when computers have been put up against radiologists, I believe they already tend to win. Google recently ran a challenge I believe. Yet we still depend on the luck of getting a good radiologist.

So I'm sympathetic to the incredibly challenging job, but like many things I wonder if computers have already outpaced doctors but they refuse to admit it. Books like Curable make a good case that we should already be using computers overseen by doctors, rather than have the incredible and terrifying variations in care.

If I had a confident CFS diagnosis earlier and suggestions to pace myself, I'd probably be mild or moderate at the worst. Instead, I was encouraged to push through with assurances of no risk of worsening my condition - by top neurologists, neuromuscular specialists, ID specialists, highly regarded GPs, and rheumatologists.

So unfortunately I have absolute awe at what they go through to become doctors, and sadly contempt for their success in treating chronic illnesses and the likelihood of them causing more harm than help. (I have numerous physician friends and they're all good people, but none of them work in care of chronic illnesses and I don't blame them since our system is set up to punish good doctors.)

I'm doing poorly lately so my general outlook is accordingly bleak.

 

[Learner1]

Yep, I thought the idea of CBT and antidepressants seemed dubious, especially coming from an ME/CFS expert. He seemed very well informed about post-viral conditions when I spoke to him, but if he's just offering antidepressants and going with the treatment plan for depression, it says a lot really.

The only reason I would take these antidepressants or CBT would just be to prove my point that they don't work and that my illness will just continue getting worse. If I do what he says though, I worry that he will just give me stronger antidepressants and possibly just blame me for making my illness worse I reckon.

It doesn't make any sense to prescribe an antidepressant for a viral / immune problem. I saw a neurologist last week, and after an hour, he picked up the phone and called up an infectious disease doctor to discuss my situation and his wanting to refer me to another specialist. That was pretty impressive, I thought.

The problem with neurologists prescribing psychiatric drugs Is that there are no medical rationale and no test results for doing so. In many cases it's like looking at the contrail of an airplane, no one knows what's going on inside the jet engine...

These drugs have side effects and they deplete nutrients. They can definitely make your condition worse by depleting nutrients and having your neurological function worsen. Some are addictive. Some can make one suicidal and have FDA black box warnings to that effect.

None of those treatments is likely to help you, if anything the Sertraline is more than likely going to do harm. This doctor just marked you as depressed but was unwilling to tell you that knowing you wouldn't accept it. They moved straight to the standard treatment plan for those who are mentally ill.

Agreed.

If he genuinely through post viral he would have run blood tests looking for the viral culprit and given a positive sign of something started you on an anti viral. CBT and Sertraline are not an accepted treatment for a post viral condition in any reasonable place in the world.

Exactly. Many of us have viruses still in our systems haunting us, like Epstein-Barr, HHV6, cytomegalovirus, Zoster, Cocksackie viruses, enteroviruses and bacterial infections like chlamydia pneumoniae, mycoplasma pneumoniae, sand/or Lyme and co-infections (babesia, rickettsia, etc.) Many of us also have immune system dysfunction - various immunodeficiencies as well as various types of autoimmunity triggered by the untreated infections. If left untreated, some of these infections can even lead to cancers and multiple sclerosis.

It is very strange that this doctor did not think to test you for infections or test your immune system or refer you to someone who would.

 

[YippeeKi YOW !!]

The problem with neurologists prescribing psychiatric drugs Is that there are no medical rationale and no test results for doing so.

That's not just neurologists. Most Drs do little to no relevant testing prior to prescribing, have no real knowledge of how the psychotropic drugs they prescribe actually work, what their very real and often lasting effects on the human brain are, and they prescribe them like they're handing out aspirin to a flu patient ...

These drugs have side effects and they deplete nutrients.

This is incredibly important. A quick google for what nutrients a particular prescribed drug depletes is a real eye-opener, and frankly, would be news to probably 90% of the prescribing Drs ....

They can definitely make your condition worse by depleting nutrients and having your neurological function worsen. Some are addictive. Some can make one suicidal and have FDA black box warnings to that effect.

Hallelujah and amen .... if you press the prescribing Dr about any Black Box warnings, they'll dismiss it with contempt and brush it away with mutterings of legal requirement, has no bearing on what you'll be using it for ....

It is very strange that this doctor did not think to test you for infections or test your immune system or refer you to someone who would.

Where's the profit in that?

Sadly no matter how ill we are, we have to take much more responsibility for our own treatment and health issues, something that Drs welcome like an infestation of rats and a personal dose of Bubonic Plague ....