Diagnostic lab tests - ideal list for medical care guide

Vit D and active VitB12 ( might be via MMA) , urinalysis.
Full thyroid not just TSH.

Comparuson of tests is worth highlighting- things may be within " normal" ranges but move - you can pick up on glucose and thyroid changes, and liver function changes

It would also be worth flagging up that there is some evidence of reduced blood flow and tests may therefore require interpretation with symptoms rather than ranges.

 

That looks a bit thin, especially for an initial work-up when alternative diagnoses need to be excluded. Not surprised though, our Health Boards are all about saving money.

Reminds me of an incident a few years ago. My doctor decided to test my Vit D levels because 1) at the time it was thought I had MS which has been linked to low Vit D and 2) I have a condition that means I don't tolerate sunlight. I had been supplementing at recommended rates but the doctor wanted to be sure it was enough. So there were clinical reasons for doing the test.

The letter with my test report stated “result strongly suggests Vitamin D deficiency”.

Then letter continued: “This is an expensive test. Many adult patients with no bone symptoms who may have low Vitamin D because of limited exposure to sun-light can be managed by taking Vitamin D without prior testing.”

Now that sort of comment really encourages doctors to be thorough. Not!

 

One of our latest scientist to join this forum @Amy Proal has written about vitamin D


19. Vitamin D is not a “miracle” and recent RCTs do not support supplementation:
For a decade now, my team has published papers and book chapters that call for an end to high-dose vitamin D supplementation. Our research indicates that the low levels of vitamin D often identified in patients with chronic inflammatory disease may be a result, rather than a cause of the disease process (eg, the concept of “deficiency” is incorrect). These two large 2018 studies support an end to vitamin D supplementation:

Effects of vitamin D supplementation on musculoskeletal health: a systematic review, meta-analysis, and trial sequential analysis

Lead author: Alison Avenues, University of Aberdeen

This large meta-analysis published in the Lancet found vitamin D supplementation does not prevent fractures/falls, or have clinically meaningful effects on bone mineral density.

Paper highlight: “There is little justification to use vitamin D supplements to maintain or improve musculoskeletal health. This conclusion should be reflected in clinical guidelines”

Vitamin D Supplements and Prevention of Cancer and Cardiovascular Disease

First author: JoAnn Manson, Harvard University

This nationwide, randomized, placebo-controlled trial found that supplementation with vitamin D did not result in a lower incidence of invasive cancer or cardiovascular events than placebo

From this link: http://microbeminded.com/author/amyproal/

I bet that is we ask her she would be more than happy to talk to us about Vitamin D, testing and supplementation. I am curious to hear more.

 

I would like to hear more too. I don't get natural sunlight due to not going outside so I'd like to know what to make of supplementation needs for this reason and for those who have had melanoma who need to reduce sun exposure.

 

Further reading re: vitamin D supplementation from @Amy Proal here:

https://pdfs.semanticscholar.org/25...51.565757622.1542418245-2138440345.1527204293

 

You are correct, there is significant symptom overlap. I was initially misdiagnosed with MS (via MRI). I then had a long period of almost-remission and when I relapsed the only reason I got another MRI is that I already had a relapsing-remitting MS diagnosis and the doctor feared it may have moved into the secondary progressive phase. Even with that the referring doctor wasn't confident that I would be accepted for an MRI and quoted a very high rejection rate (I can't remember the figure now) for MRIs in general. The system seems to be GP refers to specialist, specialist applies for MRI, some higher authority approves or refuses application. So this stinginess with MRIs applies across the board, not just to ME. Not that that makes it any more reasonable.

 

I was lucky in this respect. Because my first significant symptom was numb hands and feet suddenly getting worse ..my GP did MRI (neck) and nerve conduction tests to rule out MS. I wonder whether this can be used to check for perfusion (is that the right term?) as well as part of the test?

Symptom profile also heavily overlaps with vit b12/folate/iron anaemia so I think this should also be automatically tested to rule out mainly because it is so easy to treat. This was the last test they gave me which seems strange.

 

the nanoneedle-signal is the same for MS and MECFS
... NO, its not, as hutan explained. i misread this, sorry.

what exactly to ask for regarding a diagnostic MS-MRI ?

Spoiler: Sagittal T1-weighted MRI

Sagittal T1-weighted MRI depicts multiple hypointense lesions in the corpus callosum;
this finding is characteristic of multiple sclerosis.

Sagittal proton density–weighted MRI in a patient with multiple sclerosis demonstrates the characteristic corpus callosal and pericallosal white matter lesions.

Spoiler: FLAIR MRI

Coronal fluid-attenuated inversion recovery (FLAIR) MRI in a patient with multiple sclerosis demonstrates periventricular high–signal intensity lesions, which exhibit a typical distribution for multiple sclerosis. FLAIR MRI is a highly sensitive sequence for lesion detection, particularly supratentorially

Spoiler: Axial proton density–weighted MRI

Axial proton density–weighted MRI demonstrates multiple lesions in a distribution characteristic of multiple sclerosis.

Specifically, the periventricular lesions and the more peripheral white matter lesions near the gray matter–white matter junction are typical MRI findings in multiple sclerosis.

Axial proton density–weighted MRI through the posterior fossa in a patient with multiple sclerosis demonstrates multiple bright foci in the brainstem and cerebellum.

Proton density–weighted sequences are highly sensitive for the detection of plaques in multiple sclerosis, especially in the posterior fossa.

Spoiler: Axial T1-weighted, gadolinium-enhanced MRI

Axial T1-weighted, gadolinium-enhanced MRI in a patient with multiple sclerosis depicts enhancement of a plaque in the right temporo-occipital lobe, signifying disease activity.
Note the C-shaped, or arclike, enhancement, which is fairly characteristic of multiple sclerosis.

Axial T1-weighted, gadolinium-enhanced MRI in a patient with multiple sclerosis depicts several enhancing lesions, at least 2 of which show characteristic C-shaped, or arclike, peripheral enhancement.

Axial T1-weighted, gadolinium-enhanced MRI in a patient with multiple sclerosis demonstrates several intensely enhancing pericallosal white matter lesions compatible with active disease.

Spoiler: Axial T2-weighted MRI

Axial T2-weighted MRI in a patient with multiple sclerosis demonstrates numerous white matter plaques in a callosal and pericallosal white matter distribution

Spoiler: Axial diffusion-weighted MRI

Axial diffusion-weighted MRI in a patient with multiple sclerosis shows several hyperintense lesions, a feature of inflammatory disease activity.

 

I want to say the MRIs aren't THAT expensive, or at least not like a PET scan. Maybe $1,500 US, whereas a PET could be $10,000? It's been a while since I priced them, and my memory isn't want it once was, but I think it's broadly like that (check anyway, as I may be way off).

I think if there is a strong suspician of neurological involvement, that a battery of brain scans should be available - but of course that's not going to happen.

I wanted a SPECT, doctor ordered one, hospital refused. This happened twice with two distinct doctors and two different hospitals. One doctor was a world-class ME/CFS expert, and this was his hospital, and the radiology dept basically laughed at me when I told them who was ordering the scan.

Had a PET Scan for an Alzheimers study. They came back and said no plaques. I asked what else it showed and was told that is proprietary. So that was a dead end.

But I did have four brain MRI's and two showed lesions, and three showed mild brain atrophy. All four were ignored, so there's that frustrating component.

I didn't ignore them, though. They helped me with my own research. I subsequently found a case study of a woman who's clinical profile was almost a match for mine due to those MRIs.

So I'm all for MRI testing.

 

In the UK, a private MRI is about £200-250, so I can't imagine it's much more expensive on the NHS. I've seen US prices at 8-10 times that ($2000-2500), but that's probably the effect of private healthcare and competition in the market.

 

Diagnosing MS (wiki pages)

 

NeuroLyme can present with brain lesions. The theory is they dissipate with proper abx treatment, but with inadequate treatment, they can appear and reappear - much like the way that MS sufferer had lesions coming and going.

Then you have the whole new anti-MOG thing (used to fall under MS umbrella until they learned more) that also can provoke lesions, and neurologists throw steroids at those, and/or IVIG, and MAYBE they dissipate. That's a crap shoot, too.

The thing is, I don't think they really know all that much. They DO know that lesions are abnormalities, so let's start with that at least. But because they are so reluctant to spend the money, they frequently need to have a high confidence in their suspicion of whatever disease might be in play before they can take a picture - to see if they have any clue of what it might really be that they have little insight on how to cure anyways.

It's silly, medically and financially. From my looonnnggg-ago college Economics101 course, I think the imaging equipment is a sunk cost. Salaries are fairly fixed. So income from using the facilities should be better the more times the equipment is used. Encourage use by dropping prices. Make use routine, the machine pays for itself. The hospital or imaging center is happy, radiologists are happy, doctors are happy, patients get more data. If it's socialised medicine, in effect everything is a sunk cost, so again, promote usage.

As patients with a contested disease that little is known about, data is our best friend. Doctors can throw their hands up in...whatever, and walk away to another patient maybe they can help. We, with MRI pictures and other results, can roll up our sleeves and maybe make our own progress, at least in terms of moving toward a correct diagnosis.

 

its really gross, that there are measurable and mostly visible damages all over the body, and nobody can figure where they come from.

its a closed system of 1.80 m x 60 cm or something like that.
roughly 1 sqm to investigate.

they are at it for a couple of 1,000 years.

one could also consider this SQM to be the most important question of mankind, since its existence.
has always been more pressing than moon-landings or anything else.

ridiculous.