Mild, bizarre symptoms

[muso94]

Hello All,

Sure we're all familiar with the vagueness of the symptoms that occur with chronic fatigue.

I have been to see POTS/cardio specialist for several years, then haematology for high iron, rheumy for atypical anca and slightly low C4, gastroenterologist for a colon/gastroscopy, and now neurology for my strange symptoms. If that isn't enough I probably have to see someone else after this as neuro wants to put them down to 'functional symptoms', and probably isn't going to offer much in the way of strategies to fix these issues!

I also have bizarre bloods like low caeruloplasmin levels and mild macrocytosis and have had a couple of mildly high liver enzyme results. Like for all of us these things are pretty hard for me to understand, despite spending too much time on google scholar (and even looking up things in the med student resources/databases). Been checked for wilsons and no anemia either, and with ANA neg unlikely to be lupus (at least the drs won't consider it..).

My main question is what to do next and how to make sense of these vague but mild symptoms, as I have deteriorated night vision, trouble with sustained focus (vision), seemingly narrowed visual field as I can't process my mid-peripheral so well (plus the edges having trouble seeing at all especially on the left). The eye troubles are particularly annoying as the optometrist can't make sense of them as there is no physical problem he can see and my prescription is up to date, but clearly something isn't working!

Then there's the pain in the joints that I have trouble distinguishing from the nerve pain at the fingertips (both coming and going usually lasting a minute at a time, occasional swellings lasting a few days, vasculitis-like stinging pain and marks of a burst blood vessel (purply or red short lines), general aches and pains that come and go too (sometimes the whole leg on one side), general feelings of weakness, stomach pains mostly managed by a strict diet avoiding fodmaps etc, feeling mildly/moderately ill for no reason, alcohol intolerance, localised headaches, plus the brain fog and short term memory problems, and of course near constant exhaustion only helped a bit by turmeric supplements and an occasional caffeine hit. (All these symptoms occur in the average week mind you, vision problems constant.)

I really feel like this is enough physical evidence particularly with the swellings and vasculitis and visual problems, but still find myself stuck without a diagnosis other than CFS/Fibro, which I really don't want to resign myself to too early and miss something.

It's so frustrating how hard it is to get through everything with a new doctor (especially on a bad day) and to know which symptoms are the most important to mention! I had painful pin prick sensations from time to time for years and always assumed it was just something I couldn't see pricking me. Why do the symptoms have to be so varied and impossible?! And yet still 'mild' enough to be dismissed...

Any and all thoughts/fellow-rants welcome. Having trouble figuring out what my next steps should be. (Also congratulations you got through pretty much every complaint I could think of that plagues me at the moment. xD)

 

[Chrisjr19]

I know this doesn’t help (other than knowing you’re not alone) but I’m in a similar position to you.

Also had random moderately raised liver enzymes that appear for a couple of months and then go back to normal, plus raised Amylase (pancreatic enzyme). Along with that I get occasional low potassium but not markedly so.

A lot of other similarities such as waiting on a colonoscopy for IBS symptoms. Already had an upper endoscopy for stomach issues and a CT scan.

I also have eye troubles, but different in that mine are a smaller iris in one side intermittently, pain behind that eye and a droopier eyebrow with intermittent dizziness when looking back and to between objects or using my phone. Again nothing shows up with tests on eyes.

I get pain in joints but no redness or swelling, it also feels like my knees are going to give way sometimes. The fingers on my left hand are also affected.

The burst blood vessel markings is a snap too, get petechiae easily as well with trauma to the skin.

The alcohol intolerance is a well known ME symptom from what I’ve seen and easier just to avoid it.

I also get the localised headache which tends to be on the top of the right side of my head and can be throbbing, intermittent and worsened when bending down.

Cognitive fog and memory problems are par for the course with the illness too. The short term memory problems can be a pain in the neck, the worse one I find is your brain shutting down half way through telling someone something or poor word finding skills.

The pin prick sensation is also familiar too, had had that for years but never thought anything of it. Maybe an early warning sign that something was going on?

Think the best thing you can do is keep pushing on with ticking off each area, GP’s get annoyed when you present with a variety of problems so I try to focus on getting a referral for one area and then move on to the next.

I’m the same as you, been diagnosed with ME/CFS but still worrying that they are missing another diagnosis. It’s hard to accept that it is responsible for so many different symptoms.

The reassuring thing for you is that the liver enzymes return to normal so it’s not something progressive in that area. Guessing the gastroscopy and colonoscopy were fine too.

Hope it helps to know you are not alone at any rate. If you are like me you probably feel reassured immediately after a test/procedure doesn’t find anything then go back to worrying after a short while. The best thing you can do is keep running over what you’ve had investigated in your head and look in the symptoms section of this forum to get reassurance that your symptoms are being experienced by others too

 

[BeADocToGoTo1]

Sadly most doctors do not thoroughly look at inputs and outputs, and often overlook symptoms that are due to micro-nutrient deficiencies. Just in case you have not looked into this, have you tested for nutrient deficiencies or any form of malabsorption or microbiome dysbiosis which can cause nutrient deficiencies?

Have you had your copper-to-zinc ratio tested?

Are you taking a lot of supplements that might throw some things out of balance?

Have you tried taking some vitamin A (for the nightblindness and blurry vision) and vitamin K (for the blood vessels, bruising, swelling)

Some tests to consider:

1. Genova Diagnostics - FMV - Gives a great overall picture of nutrient deficiencies, neurotransmitter metabolites, microbiome dysbiosis, pancreatic enzyme issues, and many more. Biochemistry and metabolomics in practice. This test should be standard for all primary care and family practice doctors as a regular preventative maintenance test, and for anything chronic or hard to diagnose. Great Plains Laboratories has similar tests.

2. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology (microbiome dysbiosis indicators), Fecal Fat Distribution (checks if you have issues with different types of fat intake and digestion), Elastase (for EPI, pancreas enzyme marker)and Chymotrypsin (for EPI, pancreas enzyme marker). Doctor's Data has similar tests.

3. Small intestinal bacterial overgrowth (SIBO) breath test, for example, Commonwealth Diagnostics International. But the first one will also provide you with SIBO indicators.

But also look at HbA1c as a quick, standard indicator of excess sugar intake which impacts your microbiome, pancreas functioning amongst many other things. 5.2% or lower is what I strive for.

There are many reasons for malabsorption and nutrient deficiencies often overlooked by doctors, so it would be good to rule out things like exocrine pancreatic insufficiency (EPI), small intestinal bacterial overgrowth (SIBO), Candida yeast overgrowth, food sensitivities or allergies, gluten sensititivity, Chrohn's etc.

One other (often touchy) subject is food and beverage. Have you taken an honest hard look at all your food and beverage intake?

 

[Wishful]

My unexpected symptom is double-vision, which others have reported too. My guess is that whatever effect ME has on the brain is also affecting the eyes, which are in a way an extension of the brain. Being ME, it expresses itself differently in different individuals.

 

[Rufous McKinney]

My eyes have been profoundly blurry and watery for: like 10 years now. Driving is very hard. Focusing is hard.

at my eye checkup, they tell me nothing is wrong. "But I cannot drive..." i mumble. I was literally shoved out of the waiting room: Nothing is wrong with you eyes.

 

[kangaSue]

If it were me, I would want to rule out an autoimmune neuropathy and have something similar to Mayo's DYS1 Autoimmune Dysautonomia blood test panel run
https://www.mayocliniclabs.com/test-catalog/Overview/37428

 

[andyguitar]

Eye problems are part and parcel of me/cfs @muso94 and because the eyes themselves almost always check out ok you get the 'There is nothing wrong' answer.... It's the wrong answer. If we look at what happens in migrane (very common in this illness) and accept that it is probably best described as a neurological disorder then the eye problems in me/cfs should also be seen in a neurological context. So it's not one for an optometrist. It should be a investigated by a Neurologist.

 

[Rufous McKinney]

If we look at what happens in migrane (very common in this illness) and accept that it is probably best described as a neurological disorder then the eye problems in me/cfs should also be seen in a neurological context.

What actually happened, when I went to the Not doctor eye doctor, was 1) no glaucoma 2) he suggested I get chelated....(after he closed the door so nobody could hear him tell me that.). then: shoved out the door go away.

 

[Rufous McKinney]

If we look at what happens in migrane (very common in this illness) and accept that it is probably best described as a neurological disorder then the eye problems in me/cfs should also be seen in a neurological context.

Yeah: I got nowhere, once again.. But I don't have glaucoma. Universally: there is nothign wrong with you simply means: we did not look at anything thats wrong with you.

 

[nanonug]

high iron

Has the high iron resolved? If not, have you been tested for hemochromatosis?

 

[muso94]

My unexpected symptom is double-vision, which others have reported too. My guess is that whatever effect ME has on the brain is also affecting the eyes, which are in a way an extension of the brain. Being ME, it expresses itself differently in different individuals.

double vision is not fun I'm sure, haven't had that one thankfully. I don't want to be that person jumping to conclusions so I'll just say I feel that that is worth pressing the doctors about if you haven't already.

 

[muso94]

Agree Rufous, when problems are bad enough to disturb driving they're clearly real! Wish that doctors would be more professional/mature about things, but I suppose they're afraid of being sued! Such are the times..
And thanks Chris, good to know that we're not going crazy but it is a huge source of frustration for sure. I've pretty much covered everything at this point, even have a perfect sleep study to file away ughh. Doesn't explain why I need 11 hours of it then!! I get low potassium too actually, or have had once, but then it's hard to know what is important and what is just an outlier isn't it?

Thanks for input all, tonight i'm trying not to stare too hard at my pinky again haha. You always feel silly when the (visible) symptoms you bring to a doctor are mild, like a burst blood vessel, but I'm wondering if my finger is at slightly odd angles or if I'm imagining it...plus looks swollen. (I'm concerned about RA as there was an amount of RF (<20?) when they tested it, but it's hard to know what each result means when it's not fully explained especially considering results differ between labs.) I risked one wine tonight for the first time in quite a while and so far feel alright, might not know for a day or two though. Apparently preservatives (eg sulphides) can be the culprit, so I am hopeful that I may be able to investigate this further and am trying to minimise them which seems to be helping a little.

So I reckon another rheumy is the way to go, but also don't want to waste time and energy (and money) if I should be focusing on other things, plus the whole process is stressful and has been unhelpful so far. Cardiologist, while being a little condescending as usual, was helpful in saying that the treatments I'm looking at are the same as whatever I might be diagnosed with anyway so even if I think it could be something else I should be trying seriously to work along those lines. Can't argue with them as long as they're thorough with their investigations, something I think my last rheumy really wasn't...

There is a neuro-focused physiotherapy place I am looking to try, fingers crossed they will be more helpful than the pacing place, if I find out that pacing is their main spiel too I will lose it though hahaha. Techniques to help out can't hurt but I don't want to hear about pacing - especially when everyone is patient in theory but gets shitty in reality when I remind them for the hundredth time that they shouldn't be asking me to run their errands as it means literally nothing else I need to do will happen! (rant over I promise.) So will just see how that goes, I'm also trying coconut oil as there are some studies singing its praises for cognitive issues like short term memory loss. Will check back in to say if anything is working!

 

[Hip]

I really feel like this is enough physical evidence particularly with the swellings and vasculitis and visual problems, but still find myself stuck without a diagnosis other than CFS/Fibro, which I really don't want to resign myself to too early and miss something.

Here are some lists of diseases that have similar symptoms to ME/CFS: AAFP ME/CFS Differential Diagnosis, Dr Myhill's ME/CFS Differential Diagnosis, Diseases similar to ME/CFS and ME Association differential diagnosis(from the ME Association Purple Book).

You may want to check your symptoms against those, to see if anything jumps out as an explanation.

You might also like the section "RULING OUT DISEASES WITH SIMILAR TO ME/CFS" in my ME/CFS roadmap.



The process of considering/ruling out other conditions similar to ME/CFS is a lengthy one, often taking years. You start with getting tested for common ME/CFS-like illnesses like hypothyroidism, anemia, celiac, mold illness (CIRS), lupus, etc, and then progress to more rare diseases. Obviously any specific unusual symptoms you might have can also guide you.

One member of this forum was diagnosed with ME/CFS for 10 years, only to finally discover that she had growth hormone deficiency, not ME/CFS, and once treated, she was back to full health within weeks.

 

[Wishful]

double vision is not fun I'm sure, haven't had that one thankfully. I don't want to be that person jumping to conclusions so I'll just say I feel that that is worth pressing the doctors about if you haven't already.

I haven't bothered going to a doctor about it. It's most likely an effect of ME altering neural signalling, and as far as I know, no one understands that well enough to give medical advice on it. I just can't imagine a rural town GP being able to deal with it. I don't think it's likely enough that an eye specialist in Edmonton would be able to provide any useful advice either, at least not likely enough to justify 5+ hrs of driving. Actually, it would probably require several trips, so probably 10+ hrs of driving just to hear a professional "Sorry, can't help you." The double-vision is an inconvenience rather than a serious hazard, at least at this point.

 

[muso94]

I hope you do get a chance to see someone about it Wishful just in case, I have heard it associated with a couple of conditions, it can be the first sign of something neuro related from what I've read. All the best and hope it doesn't get worse.
Wow HIp I appreciate that, those resources look really helpful and I clearly missed them.It's the worst thing feeling like it could be this or that, but symptoms are too early or obscure for a diagnosis, scary how much of your life you can lose when doctors aren't thorough I will look at them when I get a chance.

I severely underslept and had to make an early appointment this morning, and I guess it made my POTS play up as I almost passed out from standing up for about 5 minutes in line even though I had something to lean on. I don't usually get that close to fainting but it was weird as once I sat down for a few seconds that's when the faint started to kick in properly. Managed to throw up too - wondering if any other POTS patients have that problem.... I mean I probably only had 4 hours sleep, but I had to fit in that appointment. Guess it goes to show that I shouldn't underestimate those symptoms (but there are so many situations where you get stuck standing around, and getting a wheelchair or something feels impractical just for this - ugh, dunno). Having multiple conditions is not fun.

 

[Wishful]

<double vision>can be the first sign of something neuro related from what I've read.

I'm sure that it is: neurological problems due to ME. I just don't feel that it's worth the drive (probably multiple trips) just for them to tell me they aren't familiar with it. I did read about double vision, and I didn't find anything that indicated possible treatment.

If I break a leg, I'll go to a doctor. For anything ME related (aside from asking for a trial prescription of something), I've been quite discouraged by my experiences so far.

 

[muso94]

Fair's fair Wishful! Hard not to feel despondent about doctors with this condition! We can only do what we feel is best for us.