Diagnostic lab tests - ideal list for medical care guide

My first MRI was more than 20 years ago in one of the early model scanners; my latest was in a brand-new, latest of the latest model machine. So image quality would have been different.

Still, both MRIs showed much the same thing: a large lesion on the spinal cord and a few white spots on the brain. Due to the technology differences they couldn't tell if those brain spots were in exactly the same location. There definitely hasn't been any progression over more than 20 years and the lesions didn't look 'active' whatever that means.

The latest official explanation for the spinal lesion is that I must have had an episode of Transverse Myelitis at some point. Transverse Myelitis, incidentally, can be caused by various viruses including the usual suspects in ME.

The latest official explanation for the spots on the brain is that they probably mean nothing, sometimes healthy people have a few spots apparently. I do wonder though if they could also be ME related, after all there've been ME studies that have found spots similar to those found in MS. Unfortunately I don't know the regions my spots were found in and whether they match those ME studies.

I now consider the MS misdiagnosis to have been the best thing that could have happened to me at the time. I was ill and I was given a diagnosis everybody took very seriously. There was a lot of support even though there wasn't any treatment back then. By the time drugs became available in NZ I was in my almost-remission period. Therefore all the 'treatment' I ever got was a contact phone number for the local MS society and a single visit from an occupational therapist who told me about ways to conserve energy and advised to listen to my body and rest when I needed to - inadvertently she gave me the best possible advise for ME!

Of course it's impossible to be 100% sure of anything but I'm as certain as can be that ME is a better fit for me than MS because:

One, my scans showed zero progression of anything, and no sign of a flare-up in lesions despite my symptoms most definitely having flared - all symptoms that is except the neurological deficit which has stayed exactly the same (so is likely just the leftover damage from the suspected Transverse Myelitis).

Two, I learned - rather belatedly, 20 years after the event, when discussing my latest scan - that my original MS diagnosis had been doubted by two other consultants at the time.

Three, my ME diagnosis was made by Ros Vallings based on ICC criteria.

Four, in hindsight I realised I had had PEM episodes right through my almost-remission. Every month or two I'd get what I thought was a virus coming on - sore throat, feeling a bit under the weather, etc. - so I'd take it easy as advised by the OT and it'd go away after a couple of days without me ever needing to get out a single tissue to blow my nose. And it always happened the day after a particularly big exertion... sound familiar?

I didn't really get much care for either illness, mainly because there wasn't much available for MS 20-odd years ago, though I did get that OT visit. And as we all know there isn't that much available for ME today. There was one doctor who informed me regretfully that the only things on offer for ME were CBT and GET - and neither was available where I live. He was rather taken aback by my emphatic reaction of "Good! Then we won't have to argue about that."

There was a big difference in attitude as soon as the MS diagnosis was reversed. Overnight my behaviour and symptoms - completely unchanged - were reinterpreted as variations on the theme of anxiety, which was surreal because as a Don't-worry-she'll-be-right-type I'm usually accused of not showing enough concern. I didn't know about the baggage ME carries back then, so was thoroughly baffled by this sudden 'discovery' of my non-existent anxiety.

 

Perhaps some sort of testing for Orthostatic Intolerance (eg, POTs or NMH) would be a good addition?

The Bateman Horne center is doing research "comparing the effects of the NASA Lean Test in 25 Chronic Fatigue Syndrome patients vs 25 healthy controls." (research might be finished? not sure)

https://batemanhornecenter.org/nasa-10-minute-lean-test-2/

The NASA lean test is cheaper and easier to do than a tilt table test.

I do wonder whether the lean test would pick up abnormalities like NMH? I had a delayed but then very sudden drop in blood pressure (and fainted) after 20-30 minutes on the tilt table test.

The lean test only lasts 10 minutes. I had symptoms after 10 minutes but not sure whether there were any abnormal measurements at that point.

Side note: I've read on other threads that some folks think the term "orthostatic intolerance" is meaningless. I don't have the physical/mental energy (and I definitely lack the medical background!) to debate whether this is a good term to use or not. I'm just using terms that have been used by other doctors and researchers.

If others want to post about why the term is useless, that's fine, but I probably won't be able to respond. Thanks in advance for understanding.

 

Yes, the NASA lean test would be a good addition since postural orthostatic tachycardia can sometimes be improved with treatment.

As a tactical move I wouldn't use the expression "POTS" at this stage. In my experience POTS is even more of a mystery to NZ doctors than ME and when they look it up they seem to view it as an even more suspect diagnosis than ME. But they do understand "postural orthostatic tachycardia".

The tilt table test is only available in one or two centres in NZ, so not very practical.