Going down the road feeling bad

[D1Meyro]

For > 1 year, I've been dealing with some hand tremors. Generally I feel ok. Not sure what an MS episode is like so not sure if I've had one. The only think I can think of is getting fairly sick a few months back with what I thought was food poisoning initially but I was the only one that got sick. Really horrible headache and I could barely move. Felt nauseous but really didn't vomit. That said, I felt so bad that if I owned a gun, I might have considered putting myself out of my misery. Don't take me literally but yeah, it was that bad. About a year or so prior, I had a CAT scan for what felt like a sunburn under my skin. Most bizarre thing in the world but it went away. Shingles were ruled out. It was bilateral and pretty much throughout my torso and back.

With some encouragement, I finally went to the neurologist to see what was going on with my tremors as they progressed and I was starting to have a bit of weakness in part of my hand. Nothing major but it is there. Now after seeing 2 neurologists, I was just referred to a third who is a demyelination specialist. Second neuro was upfront in stating she was not diagnosing me yet but I could have MS based on what she was seeing and the results of my brain MRI.

Starting to get a bit worried but I realize it isn't the end of the world. Interested in thoughts?

Based on putting pieces together, I think I have 3 things going on which may or may not be related. 1) Compressed nerve in my elbow 2) Stenosis in my spine. Not horribly bothersome but annoying. I've had much worse spine issues so I would describe this as livable and 3) a bunch of lesions in my white matter that very well could be MS. I'm wondering if this is the cause of the tremors as my tremors are worse on the left side and these seem to be oriented perpendicular to the right lateral ventricle. THOUGHTS?

More background:

First neuro initially thought it was spine-related given my history of having 2 fusions but EMG showed otherwise. Ruled out Parkinsons and MND. He indicated that I likely need a decompression of elbow (makes some sense as I do have a little bit of tingling in my 4th and 5th digits) however he said it didn't explain the tremors. Decided for a second opinion for a number of reasons, not the least of which is that the first doc was clear that he didn't think the tremors were caused by nerve compression but didn't really offer any other course of action. Second neuro was more thorough and ordered a brain scan and reordered Cervical MRI and EMG (oh happy happy, joy joy). EMG was fairly consistent I believe but I don't have results in front of me.

Symptons include:
- Major hand tremors (intention) that occur primarily when closing my hand or attempting to touch a finger to thumb (slow or fast) or when I try to move my wrist up and down slowly. They are not resting tremors so likely not PD.
- Random twitching - sometimes in my hands, arms, legs, shoulders. Not constant but more than enough to know they are there everyday.
- blurred vision at times. I assumed this was just getting older and perhaps a bit far sighted. The issue occurs intermittently. Sometimes, staring at my phone for a while and then looking up will set it off. Generally will take several minutes for my eyes to adjust.
- Cramping. Hands (this is fairly new) and legs / feet (everyone has these). the hands cramps have occurred while driving and just by turning my arm.

EMGs (I've had 2) showed:
- L. slowing across the elbow (ADM: 61 m/s --> 43m/s, FDI: 59m/s -->42 m/s; CMAP amplitudes normal. R. Ulnar had similar findings at this location
- L. ulnar motor nerve conduction - 21% and 24% reduction in CMAP amplitudes btwn wrist and elbow stimulation sites suggestive of conduction blocks at ADM and FDI muscles respectively.
- L. Ulnar sensory nerve conduction study: reduced SNAP amplitude with normal conduction velocity and distal latency

MRI of C-spine (lots going on). I've had a fusion at C5-C7. Most notable issues were severe bilateral foraminal stenois C3-4 and on the left at C6-7.

Impressions were Bilateral ulnar neuroapthy aat elbow with possible conductive block on left side. No evidence of significant axonal injury .

Brain MRI:
- Impression: Fewer than 10 nonenhancing foci of white matter T2 prolongation, the largest of which is ovoid and oriented perpendicular to the right lateral ventricle, concerning for a primary demyelinating disease.
I'm not sure why the radiologist wasn't more specific as to the number of lesions but I assume fewer than 10 is greater than 1 but less than 10.

After receiving the results, second neuro referred me to a demyelination specialist and ordered a T-Spine MRI.

So group, what are your thoughts? Is this consistent with MS? I know, I know, let the docs diagnosis and don't get myself crazy but I'm definitely a bit apprehensive.

Thanks in advance!
Meyro

[lyndacarol]

Welcome to ThisIsMS, Meyro. I have no medical background, but (as you asked) here are my thoughts:

In all your medical investigation, you have mentioned a CAT scan (for that sunburn sensation), 3 neurologists, MRI, EMGs, but have you had any blood tests? Such as these suggested by the University of Chicago when investigating peripheral neuropathy ("Tingling in the digits" is the description of peripheral neuropathy.):

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

Please note that the first blood test the U of Chicago suggests is for vitamin B12. (If you have these, would you be willing to share the actual number results?)

Any person at any age can develop a B12 deficiency.
Do not take any vitamin B supplements before testing, as this will skew test results.
If your GP or neuro will order screening for B12 deficiency, initial testing should include #1 a serum B12 test (or the newer, more reliable HoloTc test which, unfortunately, is not yet available everywhere), #2 a serum or RBC folate test, #3 a serum homocysteine test, and #4 a methylmalonic acid test (either the serum or urinary form).

Since all your symptoms are consistent with many conditions, including B12 deficiency (MS and B12 deficiency look the same) and MS (which can only be diagnosed after the other more likely causes have been ruled out) AND since B12 deficiency can be identified by testing (there is NO definitive test for MS) AND since it is estimated that 40% of the American population has suboptimal B12 levels, this is the place to start the investigation of your symptoms, in my opinion.

We wish you all the best; please let us know how it goes.

[D1Meyro]

Thanks for the response. Yes, GP ordered blood work early on. Not sure all of them but, B12 was normal, Liver enzymes were normal but I do have a history of marginally elevated enzymes. Also history of gout. Uric acid on last test was a little high but not terrible. HIV/AIDs neg. Hepatitis = neg. Glucose fine. I have started recently taking B12 supplements figuring it can't hurt.

[ElliotB]

Eat better, sleep better, take nutritional supplements, exercise more, and let the doctors diagnose and don't get yourself crazy.

Hope you feel better soon!

[D1Meyro]

seems like solid advice, Family Elder.

[lyndacarol]

Thanks for the response. Yes, GP ordered blood work early on. Not sure all of them but, B12 was normal, Liver enzymes were normal but I do have a history of marginally elevated enzymes. Also history of gout. Uric acid on last test was a little high but not terrible. HIV/AIDs neg. Hepatitis = neg. Glucose fine. I have started recently taking B12 supplements figuring it can't hurt.

Meyro, since your first post was so detailed, I assume you have or can get the actual result numbers for your B12 test (which was probably the outdated "serum B12"). The actual numbers for any tests (and the standard ranges used by your lab) are more useful than "normal" or "fine." Many experts believe that the lab standard range for the B12 test in the US is set too low (usually in the US, 200 pg/mL and below is considered a deficiency; by contrast, in Japan a patient below 500 pg/mL is treated for deficiency).

Since you have begun taking B12 supplements recently, test results would not be reliable at this time in your case.

And about B12 supplements, you are exactly right: "it can't hurt." Vitamin B12 is water-soluble; any amount the body does not use is flushed out in urine. Vitamin B12 is non-toxic, has no side effects, and is inexpensive. Since the B12 pathway from mouth to the cell is complicated and can be blocked in many places, the most effective forms to correct a deficiency are sublingual tablets or injections (which some believe work faster than sublinguals).

B12 injections given in doctors' offices in the US are in the form of cyanocobalamin, which is not readily bioavailable because it must be decyanated first. The methylcobalamin or hydroxocobalamin forms of vitamin B12 are more bioavailable, and are preferred by many for injections or sublinguals.

In my own personal case, my doctor has prescribed daily methylcobalamin injections which I self-administer (in the manner of a diabetic with insulin injections).

[Youarethecure]

Eat better, sleep better, take nutritional supplements, exercise more, and let the doctors diagnose and don't get yourself crazy.

Hope you feel better soon!

^^^^Exactly this.

OP, how old are you? M/F? Any family history of autoimmune diseases?

[D1Meyro]

Male, 46.
I have a sibling with a host of neurological issues including CRPS, RSD, small fiber polyneuropathy but we don't have similar symptoms at all. She has had brain MRI that was normal.
T-Spine MRI on tap tomorrow.
Family Elder, do you have supplements that you recommend besides B12? Heading to demyelination specialist in about 2 weeks.
As far as driving myself crazy....too late!

[D1Meyro]

One more question. Do periventricular and subcortical lesions meet the "separation in space" criteria? How do they determine "separation in time" if there are no active lesions? I've got a couple of past unexplained incidents that might have been flares but not really sure what a flare up is.