How can I truly know if I have ME/CFS?

crypt0cu1t

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I know this has probably been asked a million times, but how di we TRULY know that we have ME/CFS? I mean, especially in a case like mine where I dont really have any typical CFS symptoms like sore throat, PEM, swollen glands or fevers. Its mostly all neurological. I mean, I get tired after exercise but its never delayed, it's always instant.

I have been reading that people with ME also typically have a low ESR/CRP, which is totally different than me being that mine are both high. I have 2 antibodies that I dont think most people with ME have (AChR Binding, Salivary Protein 1) and I went into remission with high dose IVIG..

Do you guys think that I have ME, an autoimmune disease or something else? I'm just really curious if I'm in the right place and I'm really doubting that mine was ever ME/CFS in the first place.
 

Marky90

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PEM is the main symptom of the disease, but it might not be so obvious early on. It`s possible to be completely exhausted at the start, without delayed PEM, and have ME/CFS. I would say that if u months on from now still cant increase ur functioning level, and especially if the pushing makes u worse for a period, ME/CFS is a possibility. A lot of people dont have the infection-like symptoms, and many have them. Do we have the same disease process? Who knows, but we fit in the same diagnosis criteria. The only way u can narrow down the alternatives of what u might have, is to keep getting medical assessments.

I would advice u to be careful with physical exercise if u get symptoms, I have tried gradual exercise many times and i end up crashing hard eventually everytime.

Good luck to you, and feel free to ask anything
 

ljimbo423

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Do you guys think that I have ME, an autoimmune disease or something else? I'm just really curious if I'm in the right place and I'm really doubting that mine was ever ME/CFS in the first place.
I really don't know if you have ME an AI disease or something else. I'm almost certain I have ME/CFS but I still wonder from time to time if it might be something else.

Without a definitive biomarker, all I can do is make my best judgement call. That must be frustrating to doubt if you have ME. Even though I am almost positive I have it, that very tiny bit of doubt I have really bothers me when it comes up.

I mean, especially in a case like mine where I dont really have any typical CFS symptoms like sore throat, PEM, swollen glands or fevers. Its mostly all neurological. I mean, I get tired after exercise but its never delayed, it's always instant.
I think it's possible to have ME/CFS and have your list of symptoms. There does seem to be very wide range of different symptoms that present very differently in different people.
 

Wolfcub

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@crypt0cu1t From the beginning I never had fever, on any day, never had sore throat or swollen glands. I don't even get all-over body (muscle) aches.

But what initiated everything and continued (relapsing/remitting) was a distinct feeling like I'd got flu.

My ESR (erythrocyte sedimentation rate) and CRP (serum C Reactive Protein) were tested twice and found to be within normal parameters.

I was stumped, and so were both doctors (on two separate occasions within 4 months of becoming unwell)

I even doubted I was getting PEM as I'd heard it described by so many....that's because I was constantly muddying the waters. Never properly resting (I can't you see, I live alone in a fairly primitive lifestyle with constant work that needs doing just to get by) Even on days I tried to "rest" I would still have to do some tasks, some of them requiring strength.

Sometimes I'd walk 2-3 miles and feel fine! And fine the next day and the next....until wham -3 days later!
It was really hard to pin it down and get clear evidence.
Only a couple of times I'd been feeling quite good, went for a long walk (6+ miles) came back a bit achy and tired, slept really well and felt terrible 2 days later and for 3-4 more days. Much more than I would have before (2 years ago) More strict rest helped it to pass.

I repeated that then rested strictly afterwards as a test, and found I did indeed get PEM, only quite delayed. Sometimes 2 days.

I think there are many sub-groups, and many variations of ME/CFS. Some with auto-immune features as well as some which don't have that.
But of course I am not saying you do or don't have ME/CFS. But I think it can take many shapes.
 
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I know this has probably been asked a million times, but how di we TRULY know that we have ME/CFS? I mean, especially in a case like mine where I dont really have any typical CFS symptoms like sore throat, PEM, swollen glands or fevers. Its mostly all neurological. I mean, I get tired after exercise but its never delayed, it's always instant.

I have been reading that people with ME also typically have a low ESR/CRP, which is totally different than me being that mine are both high. I have 2 antibodies that I dont think most people with ME have (AChR Binding, Salivary Protein 1) and I went into remission with high dose IVIG..

Do you guys think that I have ME, an autoimmune disease or something else? I'm just really curious if I'm in the right place and I'm really doubting that mine was ever ME/CFS in the first place.
You sound like me first years. I never run fevers because I have low TNF II ( I think is the right citokine). I have had 3 or 4 fever my whole life.
2) I never had anything except PEM THE FIRST 3 years or so, very bad sleep and fatigue, brain fog. That was it for first years.
I never had low ESR. I am border high.
I never had throat pain, or lymph toll later on like year 10 or so.
I am diagnosed by a cfs specialist and I have low Nk cells activity... ( I just got it normal after 7 years or so of treatment)
Don’t over do. Try to get a full inmune profile and that will help you know what is going on! Best of lucks
 
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Hi!
I can totally relate to your question and your situation. For the purposes of getting a quick response to you tonight, I have two thoughts/suggestions.
1. Because we still don't have a definitive medical test or biomarker for ME/CFS, this horrific disease is usually a diagnosis of exclusion. In fact, 10 to 15 years ago you could NOT be seen at the Stanford CFS clinic until the patient had a number of other diseases ruled out. That list of diseases remains on the Stanford CFS Clinic website. This list of other possible conditions is grouped by specialty. I would suggest you take a look and pursue a work up for any other disease that may sound like a good fit for your symptoms and your medical findings to date.
2. It is my understanding that the Salivary Protien 1 antibody is strongly associated with Sjogren's Syndrome. Safe to assume you tested negative for the two antibodies for Sjogren's? (SSA and SSB)?
I ask because Sjogren's is so much more than dry eyes and dry mouth. The John's Hopkins website has an excellent overview of the neurological manifestations of Sjogren's and tests beyond antibidies found in the blood.
Lastly, I'll share something my Neuro said to me a few years ago that was both hopeful and heartbreaking. She told me that it may take a few years before "my disease" fully presents itself (and is presumably definitely diagnosed).
I will hold that hope for you.
Best wishes,
Zebra
 

nanonug

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how di we TRULY know that we have ME/CFS?
Until (and if) there is a marker, we don't.

I get tired after exercise but its never delayed, it's always instant.
This is what happens to "normal" people. But if it happens much sooner in your case, there might be some pathological condition at work. But given you don't have PEM, I'd say it's unlikely you have CFS. Of course, only a doctor is able to properly diagnose you and I'm no doctor.

I have 2 antibodies that I dont think most people with ME have (AChR Binding, Salivary Protein 1) and I went into remission with high dose IVIG.
Aren't AChR Binding Antibodies a diagnostic test for Myasthenia Gravis? And aren't Salivary Protein 1 Antibodies a diagnostic test for Early Sjogren's Syndrome? Either is nasty enough in isolation, particularly the latter.
 

crypt0cu1t

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Aren't AChR Binding Antibodies a diagnostic test for Myasthenia Gravis? And aren't Salivary Protein 1 Antibodies a diagnostic test for Early Sjogren's Syndrome? Either is nasty enough in isolation, particularly the latter.
Mine were 11 times higher than a normal person's at one point and Yes, they are associated with MG and sometimes LEMS & Autoimmune liver disease. The problem is that I dont fit the clinical profile for any if those but I do fit the profile for sjogrens.

My diagnosis is Autoimmune Autonomic Ganglionopathy caused by Sjogrens and the fact that I have AChR antibodies & significant dysautonomia symptoms.
 

crypt0cu1t

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I would'nt say you have ME thats for sure. Sounds more like an Autoimmune disorder. But you might just make it into CFS territory. Bit of a sqeeze though.
I think a positive response to IVIG does indicate autoimmunity but it's just frustrating having no antibodies that actually correlate with my encephalitis symptoms which are the worst.
 

wigglethemouse

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I ask because Sjogren's is so much more than dry eyes and dry mouth. The John's Hopkins website has an excellent overview of the neurological manifestations of Sjogren's and tests beyond antibidies found in the blood.
The paper in this thread is so interesting in learning about Sjogren's. As @Zebra states Sjogren's is so much more than dry eyes and mouth. Give it a read @crypt0cu1t
Thread
https://forums.phoenixrising.me/threads/kynurenine-pathway-and-sjogrens-syndrome.75239/#post-2183194
Paper
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6321004/

I read that at least 50% of folks with Sjogrens don't have the SSA and SSB antibodies yet. Often takes 10+ years to get those. And likely much higher than 50%. That why the interest in the Early Sjogrens test results that appear earlier than SSA/SSB.
 

Gingergrrl

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@crypt0cu1t I will never diagnose anyone or tell them that they do or do not have ME/CFS (or any other illness) but my gut (which could certainly be wrong) from talking to you in many threads and via PM is that you do not have ME/CFS.

I was given a "CFS" diagnosis (b/c "ME" is not used in the US) by five doctors in 2013 and 2014 and I whole-heartedly believed it was my diagnosis when I joined PR. I volunteered with OMF and the End ME/CFS Project (in 2014) and read everything that I could to learn more about my diagnosis. I matched in many ways (b/c it started as a post-viral fatigue syndrome following Mono from EBV, I had positive IgM+ titers for EBV for 3-4 years post-Mono, I had very low NK cell functioning, non-existent vasopressin, and matched on all of the things that were used in lieu of having a bio-marker).

But when I saw an ME/CFS specialist, as time passed, we both realized that I was very different from his other patients on many factors and the biggest factors were that I did not have delayed PEM, flu-like symptoms, or brain fog. I did however have POTS & MCAS (two of the biggest co-morbidities in his patients). I also had severe muscle fatiguability and muscle weakness (like his other patients) that led to me having to use a wheelchair but mine was progressive and affected my lungs, diaphragm, and breathing.

He said that my muscle and breathing weakness was more severe than any of this other patients (meaning those who could come to his office and not those who were 100% bed-bound which I never was). I failed every test of hand grip strength and spirometry/PFT testing of lung functioning (and this was different than his ME/CFS patients who could pass those tests in the moment but then had delayed PEM).

We knew I had (confirmed) Hashimoto's Disease, POTS & MCAS but could not figure out the missing piece until I tested positive for the N-type Calcium Channel (or LEMS) autoantibody. And then once high dose IVIG and Rituximab brought about this "remission" (for lack of a better word b/c I am not at pre-illness levels), we knew my case was autoimmune. If you have the myasthenia gravis autoantibody at 11x normal plus the Sjogrens autoantibodies, to me, your case is autoimmune.

Does this mean that you also have ME/CFS... I truly do not know? Did I have it in the beginning and then it morphed into other things... I also do not know? My fatigue was severe in the beginning and I had severe insomnia and GI symptoms but all of that shifted into POTS & autonomic problems, muscle & breathing issues, and then MCAS with anaphylaxis. It was challenging to tease it apart but once I tested positive for 11 auto-antibodies, there really was no other logical plan but treatments for autoimmunity.

I am also baffled why you have symptoms of autoimmune encephalitis but test negative for the autoantibodies but there are cases of everything that are sero-negative and you have enough other autoantibodies, plus a positive response to IVIG, that I would continue in that direction (if it was me) and worry less about the label even though it is incredibly frustrating not to have one!

Back in 2015 & 2016, I had people tell me that 100% I had ME/CFS but was in denial and needed to stop searching for other illnesses and at the same time I had people telling me that I did not match with ME/CFS and that I MUST keep searching. So you will get a variety of feedback and all you can do is research everything and work with your doctors to find the right plan for you.
 
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crypt0cu1t

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I am also baffled why you have symptoms of autoimmune encephalitis but test negative for the autoantibodies but there are cases of everything that are sero-negative and you have enough other autoantibodies, plus a positive response to IVIG, than I would continue in that direction (if it was me) and worry less about the label even though it is incredibly frustrating not to have one!
That's what is frustrating me, if I could isolate the antibody causing my encephalitis symptoms, it would put my mind at ease so I could have a betetr treatment outlook. Because some anibodies are treated differently with different immune therapy.

But who knows, maybe it really isn't encephalitis and it's the cyst causing part of the "encephalitis" symptoms.
. If you have the myasthenia gravis autoantibody at 11x normal plus the Sjogrens autoantibodies, to me, your case is autoimmune.
My doctor believes that my AChR antibodies and SP1 antibodies are causing a form of dysautonomia called AAG and I do have a few symptoms of it. I guess I'll never know my one true diagnosis and have to agree with Dr. Chheda that I seem to have a mix of things.
 

crypt0cu1t

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I failed every test of hand grip strength and spirometry/PFT testing of lung functioning (and this was different than his ME/CFS patients who could pass those tests in the moment but then had delayed PEM).
That's similar to me. I am just in a constantly weak & fatigued state. I dont get delayed weakness or PEM it just happens if i do anything and slightly improves with rest. I pass the tests and lung function tests but I still feel mine is similar to yours because I dont get delayed PEM
 

crypt0cu1t

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I am also baffled why you have symptoms of autoimmune encephalitis but test negative for the autoantibodies but there are cases of everything that are sero-negative and you have enough other autoantibodies, plus a positive response to IVIG, than I would continue in that direction (if it was me) and worry less about the label even though it is incredibly frustrating not to have one!
Sorry for replying in so many different comments, I just learned how to quote pieces haha
I had a consult with Dr. Pendergraft who recommended Rituxan & possibly cellcept. He also said it's entirely possible and extremely likely that I have a yet unidentified Autoimmune Encephalitis antibody since so many new ones are being discovered every year.
 
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He also said it's entirely possible and extremely likely that I have a yet unidentified Autoimmune Encephalitis antibody since so many new ones are being discovered every year.
I've been dealing with: whatever this is for: 64 of the 65.99 years I've lived. While of course not meeting those criteria: but the stage is set for: issues with the immune system.

And I had from about 22-48: a long run of just sometimes I am tired, and I can tell my immune system isn't very good, I get sicker than other people who get the same thing. I figure: I have Chronic Eppstein barr...sounds possible. Yet I was not sure it was even real, or even existed.

I never used CFS. Or ME. I was diagnosed with SEID 3 years ago. In five minutes with virtually no tests, and no tests of exclusion.

I don't think I ever experienced: PEM in the classic sense: until the last few years. and I didnt really even understand it AS that, until about 2 years ago. And only in the last 8 months - and coming here: did I actually GET it (clear PEM and classic every symptoms except hard core POTS).

So: I would encourage you to proceed cautiously until we get more diagnostic clues and/or your more confident in the diagnosis.
 

andyguitar

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If you do have symptoms of Encephalitis @crypt0cu1t it does not automatically mean they are being caused by something that is happening now. It could be caused by an adverse bio-chemical event in the past that has not got better yet. When it come to having a diagnosis of ME or CFS, as you are no doubt aware there is a lack of understanding about that illness and much prejudice. So if you can have your symptoms attributed to something else ie Autoimmune I'd save yourself a lot of trouble and go for that.
 

crypt0cu1t

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If you do have symptoms of Encephalitis @crypt0cu1t it does not automatically mean they are being caused by something that is happening now. It could be caused by an adverse bio-chemical event in the past that has not got better yet. When it come to having a diagnosis of ME or CFS, as you are no doubt aware there is a lack of understanding about that illness and much prejudice. So if you can have your symptoms attributed to something else ie Autoimmune I'd save yourself a lot of trouble and go for that.
Well, my Blurry, Double vision, weak muscles and physical fatigue are all explained by the AChR antibodies and The dry eyes/ dry mouth are explained by the salivary protein 1 antibodies.

The symptoms left are the Palinopsia, Seizure like episodes, sensory overload and derealization. Those are not caused by SP1 or AChR (as far as I know) but the reason I think the encephalitis is something happening now is because high dose IVIG completely took it away and then it came back 2 months later.
 

Gingergrrl

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She told me that it may take a few years before "my disease" fully presents itself (and is presumably definitely diagnosed). I will hold that hope for you.
I love this @Zebra and I definitely feel like it pertained to my case as well. There were times that I had to add the word "yet" when speaking about my illness. Like instead of saying, "We have no idea what is wrong with you" I would think, "We have no idea what is wrong with you YET".

That's what is frustrating me, if I could isolate the antibody causing my encephalitis symptoms, it would put my mind at ease so I could have a betetr treatment outlook. Because some anibodies are treated differently with different immune therapy.
I agree but at the same time, there is definitive proof (on lab tests) that you have MG & Sjogrens autoantibodies (plus symptoms of autoimmune encephalitis) and the treatment choices are usually some combo of high dose IVIG, plasmapheresis, Rituximab, or immosuppressants (like CellCept, Imuran, etc). Have you read "The Girl on the 6th Floor"?

But who knows, maybe it really isn't encephalitis and it's the cyst causing part of the "encephalitis" symptoms.
I actually do wonder what role the cyst is playing in your case (which would be a separate factor and treatment).

I guess I'll never know my one true diagnosis and have to agree with Dr. Chheda that I seem to have a mix of things.
I have to agree with Dr. Chheda that you have a mixture of several different things (like I do). I don't think there is one true diagnosis that will explain everything in your case as there was not in mine. The closest I can come to one word for my case at present is "autoimmunity" which is very vague and tells nothing by itself.

I pass the tests and lung function tests but I still feel mine is similar to yours because I dont get delayed PEM
We are different re: symptoms but similar that we do not get delayed PEM.

I had a consult with Dr. Pendergraft who recommended Rituxan & possibly cellcept. He also said it's entirely possible and extremely likely that I have a yet unidentified Autoimmune Encephalitis antibody since so many new ones are being discovered every year.
I apologize if you already told me but who is Dr. Pendergraft? I agree with him that there are endless autoantibodies that have not been identified or discovered yet.

So if you can have your symptoms attributed to something else ie Autoimmune I'd save yourself a lot of trouble and go for that.
I think part of the frustration for @crypt0cu1t (which I also went through) is wanting to have a diagnosis that is accurate. I agree that it is easier (from the perspective of stigma, ignorance, and access to treatment) not to have an ME/CFS diagnosis. But for me, all I wanted was to know what the heck was wrong with me!

If it was ME/CFS (as I was told by all doctors for 3+ yrs and I whole-heartedly believed), I was okay with that. It was only when it appeared that ME/CFS was no longer my diagnosis that I felt a sense of panic b/c we no longer knew why my muscles and lungs kept getting weaker and one doctor said casually that if it did not plateau, I could end up on a ventilator. So I just wanted to know what was wrong w/me, and even if it was terminal cancer, (since small cell lung cancer correlates w/my LEMS autoantibody) I just wanted to know and be prepared.

The symptoms left are the Palinopsia, Seizure like episodes, sensory overload and derealization. Those are not caused by SP1 or AChR (as far as I know) but the reason I think the encephalitis is something happening now is because high dose IVIG completely took it away and then it came back 2 months later.
I did not have any of these symptoms with the exception of sensory overload to smells when my MCAS was most acute (but this is gone now). I do not think it is random that your symptoms disappeared for two months from high dose IVIG.