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About Me: 36F, 135lbs. No alcohol (2+ years), Non-tobacco smoker, frequent (near daily) cannabis smoker (last 2 years, primarily for symptom/pain management. Prior to this, very rarely used cannabis).

Summary: Suspect upper cervical spine issue causing neck/shoulder pain and neurological symptoms, and hoping to review some 2016 Head MRI images with this new context/10 yrs of symptoms. (You may want to skip to my "Request for AskDocs" section at the bottom before reading the details).

Long-term Background/Initial MRI (10+yrs):

About 12 years ago (2014), I began experiencing frequent episodes of vertigo, particularly during exertion (sports, high-intensity cardio). For about a year, it then became a more persistent vertigo, but finally subsided a bit and was more limited to exertion again. It eventually became more of a tunnel vision type dizziness, which was mostly limited to high-intensity cardio. I went through some tests through my doctor at the time since the vertigo initially been somewhat debilitating, but once the symptoms had become less severe and the neurologist didn't find anything, I kind of stopped attempting any additional follow up.

Testing at that time:

• Neurologist consults following a head CT and head MRI, and both came back normal. They were looking for "Possible vestibular paroxysmia from vascular loop or acoustic neuroma".
• I also had an ECG and 24hr holter monitor which were both normal, and an at-home sleep study ruled out sleep apnea.
• A vestibular/physical therapist ruled out BPPV, but recommended head and cervical spine follow up (due to supposedly positive Babinski and Clonus.) I don't recall knowing her exact findings/recommendations at that time, and I don't think it was shared with my neurologist, but recently received my medical records from my previous provider.
  • Note that my most recent physiotherapist did not detect these reflexes, in fact my feet had almost no reflexes, even though they used to be very sensitive/ticklish.

More Recent (Chronic) Symptoms:

Fatigue and neck pain are my most consistent symptoms. Around three years ago, I had a "flare-up" of jaw/face (mostly cheek area) and neck/shoulder pain that was pretty unbearable. Dentist ruled out any issues at the time, and I began seeing a physiotherapist for TMJ. The physiotherapist noted that my jaw opened more to the right (pain was primarily in left). I also started getting regular neck/back massages (about every 4 weeks). After about 6 months of these treatments, my pain began to subside enough to go back to a relatively normal life without constant severe pain.

• Note on TMJ: I do have a history of day and night clenching, and now very consistently wear my mouth guard at night, and very rarely notice any daytime clenching as my mental health has improved significantly (ADHD diagnosis with Vyvanse and career change).

However, ever since that initial flare up, I do still have neck/shoulder pain at least 50% of the time, and require a massage at least once every 4 weeks, often more frequently, to keep it at a manageable level.

About 6 months ago, I began seeing a new physiotherapist, and mentioned my recurring neck/shoulder pain, and my observation that the dizziness with sports seemed to be worse when neck pain was worse. Upon describing my symptoms, he asked if I had ever had a head/neck injury, and I recalled that in late 2013, months before the vertigo began, I slipped on a concrete floor directly onto my chin and required stitches. I hadn't shared this with my neurologist in 2016 (he didn't ask, and I didn't really consider that it may have been relevant).

Most Recent Flare-up:

Another flare up of severe neck pain began about 4 months ago, along with some neurological symptoms. And reflecting back, I believe these neurological symptoms started even earlier - over a year ago. The symptoms are not necessarily persistent, they tend to come and go, but there have been a lot of symptoms at once since this latest flare up began. The neck/shoulder pain is constant, and I have been doing at least weekly massage or physio for the last several months.
Disclaimer: I understand some of these symptoms are minor and may not be related, but I have been keeping track of everything lately to help with a diagnosis, since I've possibly been neglecting to get the right help for the past decade.

• Headaches (various types. Used to be mostly tension headaches, but now more of a feeling of fullness in forehead or back of head without "pain". Had at least one migraine with aura/vision loss in one eye, around the time I was seeing the neurologist, but none since as far as I am aware).
• Dizziness/Vertigo - Particularly during exertion or activities with movement+visual tracking
• Fatigue (When my pain/symptoms are particularly bad, they are often accompanied by a sudden intense fatigue, in addition to a more chronic fatigue).
• Increased motion sensitivity/nausea - Even ~2 minute car rides can make me vomit now.
• Nerve pain (burning/stinging - primarily in feet, but has also been legs, arms, face)
  • Also get a stinging pain in veins which seem to be near the surface of skin, like my elbows, back of knees and thenar/near wrist
• Tingling/pins and needles (arms, legs, feet, lips, eyelids). Also frequent eyelid twitching.
• Muscle spasms/cramping - Random muscles spasm, particularly in evenings. Hands frequently become stiff in evenings.
• Increased sensitivity to heat/hot flashes Including occasional night sweats which was never previously an issue
• Chest tightness and Globus sensation in throat
• Possible Orthostatic Intolerance: When I spend an hour or more doing relatively stationary upright activities (housework, socializing, etc.), I get a feeling of being overcome/crashing/very unwell and need to lie down, but I struggle to explain the feeling. The first, most severe time I noticed, I felt so unwell that I considered going to the ER, and it was only relieved by lying flat.
  • I don't put much stock in any wellness apps, but it may be worth noting that during this incident, my Welltory app (tracks heart rate variability) detected a rapid change in my condition and automatically made a recording at that time (It showed low health due to low HRV and high sympathetic nervous system activity).
  • It doesn't seem to be as much of an issue for more active upright activities (like walking/hiking), I suppose because my legs provide a boost to my circulation?
  • My doctor had mentioned that POTS may be something to consider, but I have since taken note of my HR during these incidents, and in general when upright, and it isn't elevated (<100 usually).
• Facial flushing: Earlier in the flare up, on days when I do some upright activities, I get very bright facial flushing in evenings. Resembles butterfly rash, but not many bumps, and only lasts a few hours then clears up. (Does not seem to be triggered by warmth, exertion, etc. and lasts longer than usual for exercise-induced flushing)
• Frequent urination: Not everyday, but there are days when it is very frequent, despite no real change in thirst/hydration. One day recorded at least 25 times. Volume is relatively low each time, and there are no other symptoms to suggest UTI. Tests for glucose all fine. No noticeable fluid retention in evenings, and never have to get up overnight.
• Exercise induced rhinitis: Within the last year, I get severe sneezing fits after running, that often cause congestion for another day or so. No known allergies, and no noticeable congestion outdoors without exertion.
• Circulation changes:
  • Raynauds type symptoms (blue/purple/white/yellow discolorations+tingling) began within the last year, primarily in hands and feet, but also get mottled skin on arms and legs more frequently. Does not necessarily seem related to cold, and is worse/more frequent when neck pain is worse.
  • Tingling/paresthesia more quickly than usual, for example from raising arms/legs or from lying down. Often wake from sleep due to tingling arms/legs as a side sleeper, which has never been an issue. *For my first strenuous activity since the flare up, I went on a 2.5hr hike. I found it fine and felt great, but did notice many new bruises all over my legs that evening, presumably from the cardio since it wasn't the type of trail to hit stray branches etc. I am fairly confident that most of them were new that day, since I had been keeping an eye on my bruises lately as I surprised how often I still had bruises on my legs despite how much less active I was since the flare up started. My recent bruises usually start off looking like an older bruise (somewhat faded/faint and blue/greyish in colour)
  • I suspect that circulation isn't the root cause of these issues, since it is so intermittent and my lipid panel was normal. But I do have a lower vascular doppler scheduled.
  • For cardiac considerations - I don't have any fluid retention/night time urinating, no shortness of breath, and I am actually in relatively good shape (frequent runner, sports, etc.)
• May be relevant, but less confident it is related: vision and dental issues more specific to left side (muscle pain/tension also more commonly on left side).
  • Vision: A few years ago, around the time of the first flare up, I noticed a significant decline in my vision less than 1 yr from my latest eye exam. Eye exam showed a fairly significant change in my vision, particularly in my left eye, but prescription had been steady for many years. Optometrist suspected my left eye was "stuck in spasm", and after a few weekly appointments, did stabilize, but both eyes increased by about -1 power (near-sighted).
  • I have had a couple of infections and root canals on the left side despite good oral hygiene, possibly partially due to the tightness in my jaw/neck on that side. No issues on right side. I also had an infection + root canal in a front tooth in 2015, and the dentist asked if I had had a head injury, but again I forgot to mention the 2013 fall on my chin. (oops)

Medical Team Progress:

Since this recent flare-up, I have been working with my doctor (who is great and thorough, but there are limitations with how quickly things can be done within our overloaded healthcare system). She has done some bloodwork (which for the most part has been normal), including for autoimmune conditions, and we are waiting on a head/neck MRI, but it has been protocolled as non-urgent so it is a long wait. Fortunately, I do seem to be coming out of the flare up now, but am still worried about continuing my high-impact activities (running, sports) with a possible spine issue.

• Note on Autoimmune: Rheumatoid bloodwork came back negative. ANA came back positive (nuclear homogenous up to 1:160).
  • Thyroid shows subclinical hyperthyroidism (normal T4, low TSH). As a child (~8yrs old), I was diagnosed with hypothyroidism (lump found by ENT after ear tubes procedure) and treated by an endocrinologist, but to the doctor's surprise, it resolved a few years later and I no longer needed medication. I have very few other details on this since I was so young.
  • I also get monthly B12 injections for pernicious anemia since I was about 15, although from what I remember, the blood test marker for the autoimmune condition causing the deficiency was technically negative but I still couldn't get my levels up with oral supplements.
  • All this to say, it's possible I am prone to autoimmune conditions. Although my personal belief is that my neck is the root of most of my issues.

My Request to AskDocs:

I recently received my Head MRI images from a previous location, to share with my current medical team who can compare with my upcoming Head & Neck MRI. But I was wondering if it might be possible to review the previous Head MRI images with consideration of upper cervical spine issues? As per the note above, cervical spine wasn't their focus back when the scan was done in 2016, so I wonder if something may have been missed. (I obviously don't know how to read them, but it kind of looks like my spinal cord area may be off center on the top view images?)

Thanks in advance to those of you who at least manage to skim through my wall of text! :)

One image included in the post, and I will add more under the auto-mod comment.