Its been a rough go

I suppose im new to this. Im a pretty thick headed individual (the kind that would nail jello to a tree for hors rather than admit it just wont work ) well heres the scoop 2020 to 2021 i started noticing i couldn’t keep up with my then 5 year old i was becoming so esaysted and felt this horrid joint pain and mustle cpain in the left side of my neck. Then comes the pain behind my left eye . Well i kept being told i was fine (i live in rural maine) and i have many md’s that flow throu the practice not including er visits (this will be relevant).fast forward to last october and i got drop foot i went to the er they wanted scanns yadda yadda they say im fine . I week later i woke up with a tremor that hasnt gone away since. I got a great pain management dr that has been trying to fight for me but its not working . My diagnosis out of boston after my recorded 22 minute appointment where this man did not even have access to my scanns (they arnt usable in the first place,due to movement ) told me i have fnd and now no other neurologist wants to contradict him. I havent had a new scan since i got the tremor. Could this be potentially structural insted of neurological?

Physical Symptoms:

Exhaustion and irritability

Inability to complete workouts

Sensitivity to temperature (heat worsens tremors, cold increases pain)

Abdominal tenderness (left upper quadrant)

Other Observations:

Symptoms began a week after getting married.

Improved involuntary movements with Topamax (but stopped due to suicidal ideation).


Laboratory Findings:

Blood Test Results:

Low BUN

Low ALT

Low Vitamin D

Low Folate

High Chloride

IgA: <1.2 (Normal: 65-450 mg/dL)

Tissue Transglutaminase Ab IgA: <1.2 (Normal: <4 U/mL)

White Blood Cell Differential:

Basophils Percent: 1

Eosinophils Percent: 1

Immature Granulocytes Percent: 2% (October 2023, Normal: <1%)

Cerebrospinal Fluid (CSF) Results:

CSF WBC Differential: Lymphocytes: 92%, Monocytes/Macrophages: 8%.

Protein Level: 27 mg/dL

Culture Result: No growth

Gram Stain Results: No squamous epithelial cells, no PMNs, no recognizable bacteria seen

Kappa Free Light Chain: <0.0083 mg/dL (Normal: <0.1000 mg/dL)

Autoantibody Tests (CSF) - All Negative:

AMPA-R

Amphiphysin

AGNA-1

ANNA-1, ANNA-2, ANNA-3

Substance Use Test (October 26, 2023):

Amphetamine Screen: DETECTED (LOD: 500 ng/mL)

Cocaine Metabolite Screen: NOT DETECTED (LOD: 150 ng/mL)

Opiate Screen: NOT DETECTED (LOD: 100 ng/mL)

Benzodiazepine Screen: NOT DETECTED (LOD: 150 ng/mL)

Phencyclidine Screen: NOT DETECTED (LOD: 25 ng/mL)

Barbiturate Screen: NOT DETECTED (LOD: 200 ng/mL)

Methadone Screen: NOT DETECTED (LOD: 200 ng/mL)

Oxycodone Screen: NOT DETECTED (LOD: 100 ng/mL)

Buprenorphine Screen: NOT DETECTED (LOD: 10 ng/mL)

Tricyclic Antidepressants Screen: NOT DETECTED (LOD: 300 ng/mL)


Imaging Findings:

MRI - Cervical Spine:

C2/C3: Normal intervertebral disc; mild bilateral facet joint arthropathy; no significant central or foraminal stenosis.

C3/C4: Minimal intervertebral disc degeneration; mild bilateral facet joint arthropathy; no significant central or foraminal stenosis.

C4/C5: Normal intervertebral disc; no central or foraminal stenosis.

C5/C6: Mild intervertebral disc degeneration; suspected bilateral uncovertebral joint arthropathy; disc material extends into the left-sided neural foramen; correlation with left C6 distribution radicular symptoms recommended.

C6/C7: Normal intervertebral disc; mild right-sided uncovertebral joint arthropathy; no significant central or foraminal stenosis.

C7/T1: Normal intervertebral disc; no significant central or foraminal stenosis.

MRI - Lumbar Spine:

L1/L2, L2/L3, L3/L4: Normal disc height, morphology, and signal characteristics; no significant central or foraminal stenosis.

L4/L5: Mild to moderate intervertebral disc degeneration; diffuse annular disc bulging; borderline effacement on the ventral thecal sac; moderate bilateral facet joint arthropathy; synovial cyst (7 mm) posterior to the right facet joint; no significant stenosis.

L5/S1: Moderate intervertebral disc degeneration; mild annular disc bulging; small annular fissure at the midline; moderate bilateral facet joint arthropathy; no significant central or foraminal stenosis.

SI Joints:

Intact

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I’m no neurologist but those mri results don’t seem like MS to me. There’s no talk of lesions or demyelination.
Hope you manage to find out what’s wrong.

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Most mri results are from before the tremors started. This is just a compilation of most recent results. I have one of my brain and cervical but i was moving during the mri due to the dystonia and the radiologist’s comments were the images were barely diagnostic . I find it frustrating being that i feel like that could impare results.

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Could you approach the different locations you have had your scans and get them to put copies of the images onto a disc or USB and then it can be transported? In UK patient has right to get copies of their images and all medical notes via ‘access to health records’ via a ‘subject access request’ not sure if you have legal rules same or not…

The lumbar puncture says 92% lymphocytes- is there a white cell count/ white blood cell count? (WBC/mm3)
Is there an oligoclonal antibody result?
Where are you experiencing a tremor?

I see MRI cervical spine and lumbar spine but there’s a bit in the middle lumbar spine, and brain MRI- have they been done?

Gosh! That’s a full list of symptoms, MRI and Blood results. I hope you know that none of us on this forum are medics in anyway- just people who have MS. Not that I’m trying to downplay your worries in any way but I’m guessing that you have also worked out that the MRI seems to have focussed on spine structure and any degradation, similarly the bloods don’t seem to have looked for MS markers. As a non medic I would say focus on correcting e.g low levels of Folate etc and find out what is causing your abdominal pain ( which doesn’t sound like a typical MS symptom)

If your clinician thought you needed a brain MRI – and clearly he or she did as one was commissioned – an option for you is to pursue that through to completion.

I know that staying still is tricky – I was once told off for swallowing, dammit - and I swear that there’s something about the magnets that actually triggers muscle twitches – but the results can be so useful that it’s probably worth persevering.

By the way, those of us from the UK – and this is a UK-based forum as you know – will have guessed from your list of tests that you’re not from around here. I guess most of us haven’t even heard of most of those! Well, I haven’t anyway.

Good luck with your efforts to find out what ails.

Well there you go. Those muscle twitches and urge to twitch that I so often feel in the MRI scanner are not my imagination after all. Here’s what the US FDA has to say about it.

(Benefits and Risks | FDA)