Is this MS Hug and other questions

[milknhoney]

I've been seeing doctors for over a year now and still no clue what's behind my pain. Next stop - neurologist. Still a few months away, so while I anxiously wait, hoping those of you who actually have MS might help set appropriate expectations.

Background: I have uveitis, alopecia areata, and exocrine pancreatic insufficiency (EPI). I went on the autoimmune paleo diet in 2021 to try to reverse the alopecia, and happy to report it helped a lot plus raised my energy, which I didn't realize was lacking. It also helped me discover a gluten sensitivity. I'm now just following a standard paleo diet.

November 2021 is when my current troubles began. I developed a mild, dull pain in the front of my lower rib cage. It gradually intensified and by the time I went to the doctor in January 2022 it was concentrated on the lower right side. Doctor thought gall bladder, but tests were normal. Got referred to gastroenterology. They found the EPI but enzyme treatment did not help the pain.

Meanwhile, other symptoms developed. I woke up with sore legs, as though I had started a new workout routine, except I hadn't. Went to Disneyland and my feet HURT. Like I was walking on burning coals. I kept having to stop and put my feet up. End of May was the turning point. I had a stressful two weeks culminating in a hike with coworkers - short but steep. Next day, super super sore from the waist down and completely wiped out. Didn't realize that was an overly strong reaction until I got to work and realized nobody else was in such bad shape. This was followed by a major flare up of the rib cage pain. By this time it was obviously musculoskeletal. The pain had moved into my sides and moved around a lot, sometimes focused in the front, sometimes one side, etc. The pain and the leg soreness and the fatigue went on for weeks.

I tried a new doctor, who ordered bloodwork and an x-ray of my spine. The bloodwork was all normal (full thyroid panel, iron, ESR, CRP, RF, ANA). The x ray showed mild scoliosis and mild degenerative disc disease. Thinking that had to be the cause of the rib pain, he referred me to a PT. The PT almost laughed at the scoliosis, which was very mild. He could not find anything that might be triggering pain. He did, however, find extreme tightness in my shoulders. He was exclaiming at how tight the right one was. His work helped me feel a lot better but didn't solve the main problems. The doctor referred me to a rheumatologist.

I'm coasting for a few months waiting for the appointment. Daily soreness and pain is the new way of life. I started doing pilates every morning which is about the only thing that brings relief (that and epsoms salt baths). My eyes also get red and burning with a headache. I asked the eye doctor if my uveitis could have spread to the other eye and she said no, she thinks they are just dry. Although that doesn't explain why it always occurs with a headache.

Rheumatologist ordered a chest x-ray, which was normal. He also ordered all the same inflammatory/autoimmune bloodwork as before (plus extras), all came back normal.

November and December was the worst. I had a huge flare up of the rib cage pain, which was unbearable. Rheumatologist prescribed celecoxib, and it may as well have been sugar pills. It didn't help at all. Meanwhile, daily muscle soreness and fatigue is getting worse. At this point, I think I have to have fibromyalgia. What else could it possibly be?? Good question... I google for conditions that cause fatigue, muscle soreness, and rib cage pain, and MS comes up. I've googled it before and I always pass it over, thinking I don't have problems walking. Plus, the description of MS Hug doesn't really describe my pain. But since you have to rule out everything before fibromyalgia can be diagnosed, I figure I should read about it more. And then I saw that while "tight corset" and "boa constrictor" is the standard description, it's actually different for everyone. In that case, then for me MS has to be a maybe. If I had to use an analogy, I'd say my rib cage pain feels like being locked in an iron maiden. Does that sound like anything MS??

Then spasticity... I don't know what that feels like. Could it be the cause of all my soreness? Or would it feel different? It does seem like my muscles are tight. I'm constantly getting up from my desk at work to stretch my legs. And when I do pilates, I have to go slow or I will pull a muscle.

As I'm reading about the symptoms, I'm becoming more aware of other little things that I've always chalked off as minor annoyances. And I don't know if that's all they are or if they should be mentioned to the neurologist. For instance, my eyes will occasionally involuntarily dart away for half a second and then refocus. I don't think that's nystagmus, but could it be an indication of something being off in that department? And now that I'm paying more attention when it happens, I realize that sometimes my eye isn't always moving. Maybe I'm just going out of focus or maybe graying out (hard to tell when it only lasts a moment).

Also pain shooting through my upper jaw happens occasionally. I've had that one forever. Was once told that sinus infection or allergy could cause that, and I've always assumed that was what was happening. But now, not so sure.

Also, I have a lot of muscle twitches. I spray myself with magnesium daily and that usually helps, but suddenly it's a constant. And some of them are strong enough to actually make me move. Like my fingers jump or my side jerking.

Then I started tingling in my right side. At first it was in my arm where I believe I have ulnar nerve entrapment. Normally, I do a set of exercises and the pain goes away, but this time it wasn't. And then it started in my leg. I mad pillow adjustments that seem to have improved my arm but the leg is strong now. It starts tingling in the morning and will carry on all day. I'll wake up normal again but then it's back a few days later.

I tested the reflexes in my knees to see what would happen. My left seemed normal but my right leg definitely jerked harder. Then my whole right side just started to feel weird. And it triggered the leg tingling.

And finally, two days ago I was reaching into my jewelry box for a necklace and just as my hand got about an inch away, it started to shake really hard. Freaked me out. Hasn't happened again.

Anyway, I saw my doctor two weeks ago. He gave me the referral to the neurologist as requested but he thinks the likelihood of it being MS is slim, on the basis that people with MS usually have muscle weakness. I wasn't under the impression that everyone has that issue in the reading I did, was wondering what the community here says to that.

Lastly, I've seen this asked for in other posts so... last blood test for D and B12 was a year ago. Vitamin D 25-hydroxy was 42.9 and B12 was 473. I've started taking enzymes since the test so if my current levels aren't at least that high something is seriously off.

So what do you think... is the neurologist going to ask me what I'm doing there???

Sorry, didn't mean for this to end up so long. Thank you for whoever takes the time to read this and respond!

[Scott1]

Hi,
Well something is going on.That shaking hand is called an intention tremor. The closer you get to the target, the more likely that it shakes. (That doesn't necessarily mean MS though)
What the neurologist wants to know will be all the things you've detailed here. He will then undertake a series of very simple tests of coordination and reflexes. As far as your eyes are concerned, he will shine a light in each of them and watch what your pupils do. None of this will determine what your problem is but the tests will let him work out how your wiring is functioning. Then, he should send you for an MRI to look at your brain and spinal cord. He may add other tests as well.
Working out whether it is MS or something else is a job for an expert. The comment your doctor made suggests, to me, no expertise about MS at all.
Do tell us what the neurologist concludes and I'm sure there will be some experiences we can share, whether it is MS or not.

Regards,

[NHE]

Welcome to ThisIsMS,

Lastly, I've seen this asked for in other posts so... last blood test for D and B12 was a year ago. Vitamin D 25-hydroxy was 42.9 and B12 was 473. I've started taking enzymes since the test so if my current levels aren't at least that high something is seriously off.

Your D3 level is fine. Normal 25(OH)D3 is around 45 ng/mL. Higher levels can worsen spasticity and increase the risks of hypercalcemia.

Your B12 is ok. However, it might be a little low. Sally Pacholok writes in her book Could It Be B12? An epidemic of misdiagnoses that the CNS can become deficient in B12 when the serum level is below 500 pg/mL. Keeping B12 between 500-1000 pg/mL is ideal. I was B12 deficient several years ago. After restoring my B12 and folate levels, I now take 1000 ug B12 once per week which maintains my level at 630 pg/mL.

[jimmylegs]

hi and welcome mnh!
i am going into a meeting but briefly, i hope you can elaborate on your d3 regimen, and any other supplements in your routine.
as one potential piece of low hanging fruit from your situation, i am curious about any other details of total daily magnesium intake from all sources, not just the spray?

[milknhoney]

Thank you for responding to me! I knew no one would be able to tell me if I have MS, but was hoping to feel validated that the neurology request was warranted. Sometimes I wonder whether I am overblowing my symptoms, especially now that I seem to be pulling out of the two-month flareup I was in.

Have definitely wondered if B12 is at play here. Didn't include in original post that the gastro also identified mild chronic gastritis, which I have read is a risk factor for pernicious anemia. Which means that just adding a supplement won't help. I wonder if I need the shot, or if sublingual drops work. Something I need to look into.

So on top of my regular diet, I supplement with fish oil, vitamin C, a probiotic, and desiccated beef liver (which supposedly is nutrient dense and more bioavailable than a vitamin supplement would be... haven't noticed a difference, so might switch back to multivitamin when this bottle is out). I also take 40,000 units of pancreatic enzymes with each meal.

I have a long list of supplements I've thought about adding, but haven't decided yet how to prioritize. I think I need to increase my fish oil. I have thought about adding a magnesium supplement - magnesium malate is what you take for fibro but I don't know if that's what I have. I've thought about adding coq10 and acetyl-l-carnitine. And I've thought about B12. For now I'm holding off because my doctor started me on an SSRI (I think he's thinking I probably have chronic fatigue or fibro). I don't want to muck up the results by adding in other supplements so giving time to see if I have any response to the med first.

Had the hand tremor again this morning, same action! It was milder this morning but significant to me because this time it was pre-coffee, so can rule out caffeine as the source. I know my new med is also a possible cause.

[jimmylegs]

hi again,
i'm sure we are pleased to provide some input in hopes that it might prove helpful.
it may be reassuring to know that magnesium is absolutely a mineral to keep top of mind with or without an msdx.

re b12, i used to be deficient from long term severely restrictive diet. many years later, i like to keep my levels at least 500 pg/ml, which in local units is 370 pmol/l. these days, healthy diet foundation plus a quality multivitamin do the trick.
for b12 in diet, you may already know that seafood is one of your friends. clams, oysters, mackerel, herring, salmon.
it doesn't sound like you need to get into the shots vs sublingual question, but when my levels were undetectable, i definitely did to make sure things were detectable fast. for several reasons, i opted for sublingual methylcobalamin. it's been over a decade since i bothered.

re d3, can i just ask you to clarify the units for your 42.9? is that ng/mL? if yes, to my ear, 42.9 ng/ml sounds high if unsupplemented. without d3 specified in your regimen, may i ask where you live? (apologies if i've missed that detail)

[NHE]

So on top of my regular diet, I supplement with fish oil, vitamin C, a probiotic, and desiccated beef liver (which supposedly is nutrient dense and more bioavailable than a vitamin supplement would be... haven't noticed a difference, so might switch back to multivitamin when this bottle is out). I also take 40,000 units of pancreatic enzymes with each meal.

It’s a good idea to check the quality of the fish oil capsules you use. Omega-3 fatty acids are easily oxidized and low quality fish oil supplements can promote disease. If they’re unflavored, then it’s easy to check them. Cut a capsule open and squeeze the contents into a small bowl. The oil should have a very mild fish odor. If, however, they smell offensively fishy like the floor of a fish market, then the fish oil is oxidized. Don’t take them, the oil is rancid. Find a higher quality brand.

Next, if the fish oil smells ok initially, then let it sit out exposed to air for an hour. The oil will oxidize and acquire a strong odor. This is normal. Some time ago I had to switch brands because the fish oil formulation had changed. The Nature Made fish oil lost its mild fishy taste and would not oxidize even after leaving the oil out for 2 days after which they had no detectable odor. I wrote a letter to the company and they refused to address any of the issues I raised. Switching brands was the easier solution.

[jimmylegs]

ok now will go through looking for anything potentially modifiable linked to your reported challenges.

i don't know much about the background conditions you list, but also enjoy a fun little cluster of autoimmune diagnoses.
re uveitis. which (if any) of these risk factors might be contributing in your own case?

Epidemiology of uveitis in a US population-based study
https://link.springer.com/article/10.11 ... 018-0148-5

personally, i would definitely be interested in ruling out any potential contributions linked to suboptimal magnesium and possibly interactions with vit B1 when dealing with pain of various types, fibromyalgia, fatigue, nystagmus, stiff muscles, twitches, cramps, spasticity, and even tetany.

the fact that the spray helps suggests that a good therapeutic supplemental dose could help too. for now i have to go eat, but will be back later on

[milknhoney]

Yes, my D3 is 42.9 ng/mL. On my lab report, it appears to be on the low end of "normal" defined as 30-100. Anyway, I live in the sunny southwestern US, although I don't know that we get more sun than anyone else since we all hide indoors when it is hot.

I have spent many hours trying to find a connection with uveitis, alopecia, and EPI with my current problems. My endoscopy/colonoscopy ruled out Crohn's/UC and the rheumatologist ruled out spondyloarthritis. Both uveitis and alopecia are associated with thyroid disease and lupus, but those are both ruled out as well. The one disease I've identified that connects all three dots is Celiac. I haven't had a uveitis flareup in over a year, and I've been gluten free for a year and a half, so that fits. Wish I could say the same for the alopecia, but activity is minimal. And EPI is irreversible. I can't confirm my theory since you can't get tested for celiac once you are already on a gluten free diet, but it's the one I'm going with for now. Anyway, it doesn't shed light on my current problems because celiac is associated with just about every autoimmune disease there is as well as fibromyalgia.

I think you are right about possibly needing more magnesium.

[jimmylegs]

ah ok, sw US makes some sense of 42.9 ng/ml without supplementation.
i'm at 43 deg latitude, so it's more challenging to get to healthy d3 levels, esp since we also tend to go with the climate control option.
i've definitely been tweaking my supplemental d3 intake over the past year. my last three D3 tests came back at 40.1, 62.9 and 50.1 ng/ml. i am happy with the third result (this past week).

from all your efforts re uveitis, alopecia, and EPI, i am very interested to read about the connections you've made with coeliac and gluten free diet. in that case, you might wish to consider zinc as a potential contributing factor.

suboptimal zinc is another essential nutrient issue to exclude, with or without an msdx.

there appear to be established links between EPI and low zinc and from there, between low zinc and uveitis, and alopecia too.
i was very interested to read that low zinc can be a factor in abdominal pain (at levels below 33μg/dl, i see). low zinc can also be involved with fibromyalgia, fatigue, muscle spasms, and more.

it makes lots of sense that low zinc would improve somewhat on a paleo/gf diet.

my own worst ever serum zinc level was 56 ug/dl. at that time, i was more fatigued, losing hair, and regularly had the muscle twitches that inspired my username. it's been a couple of years since i achieved a serum/plasma zinc level that i liked, but the labwork has shown that it definitely can be done.

magnesium and zinc serum or plasma tests and supplements are relatively inexpensive.
if tests are desired, results are easy to interpret from an optimal perspective.
finding and trialing a therapeutic supplemental intake for either can be done very safely and affordably, with or without bloodwork.

if you are interested, for either or both of these i could help with suggestions for forms, dosages, timing, and other strategies to maximize absorption.