My story & weird symptoms

Hey guys, pleasure to find this board after living w/ beta-thal minor for almost 38 years. Many things have clicked for me -- my pallor, cold hands & feet, occasional shortness of breath, etc. I'm lucky enough not to have fatigue be one of the symptoms, but I do have some strange musculoskeletal & neurological ones that started about 3 years ago w/ no current diagnosis.

Musculoskeletal symptoms include deep, dull extremity pains that wax and wane. They can be exacerbated into sharper and stronger pains by using the limbs (pushing, squeezing, walking, jumping, grabbing, driving, swimming, etc). Neurological symptoms are intermittent but involve sensations of heat and occasionally a bit of numbness.

Clean EMG/NCS, MRIs & labs. HGB 13.2, MCV 65, HgbA 88.57, HbF 7, HbS 0, HbA2 4.39.

I've had an elevated ANA ranging anywhere from 40:1 to 320:1 and used to be strictly "speckled" in type. The latest bloodwork showed that it split into 80:1 of both speckled & homogenous patterns. No real rheumatological symptoms and negative on all autoimmune-specific bloodwork, so the docs don't think it's rheumatological in nature. I've considered hypermobility / EDS but I don't qualify by either Beighton or Brighton scores.

My Vitamin D levels when this started were extremely low -- at 4.6 ng/mL. I had a bowel resection when I was a toddler due to intussusception and my mom can't even recall if it was small or large intestine (Soviet Russia, no records remaining!) If it was the small, it'd help explain the low vitamin absorption. But anyway, after megadosing 50,000IU/week for 4+ weeks straight combined with Physical Therapy I felt almost 100% better and attributed this to the PT. Now I'm starting to think perhaps it was the Vitamin D. It went up and was measured almost a year later at 29 ng/mL with little supplementation. As of a few days ago, bloodwork shows VitD at 21 so I am supplementing 10,000IU/day. B12 bounced between 200-300 early on and is, as of a few days ago, at 575.

I should note: I went vegan 3 months ago and was quasi-vegan (vegan + chicken) over the last year. I am lactose intolerant. So a few questions for you guys and gals:

1. Any thals with elevated ANA titers? Any diagnosis?
2. Any other vegan thals out there? How does your body react and what supplements do you take?
3. Any thals w/ neuro or musculoskeletal symptoms resembling mine? Perhaps thals with EDS or hypermobility?
4. Any thals who've had bowel resections and had it affect vitamin absorption?
5. What minimum levels of D & B12 should I be striving for? What is the probability that my symptoms are somehow caused by a combination of low Vit-D and thal?

I'll also take any and all general advice on my condition I've struggled to get a diagnosis from dozens of medical experts over the years.

Big thanks to Andy and all you guys for running this board so diligently.

Try to get your D level above 40. 50-80 is a good goal. I'm taking the 50,000 IU weekly dose and feel better than when I took high daily doses. For thal minors, the B12 level is best if around the high end of normal, 700-900. Are you taking magnesium? These 3 are essential for bone health.

Hey bud, knew you'd chime in sooner or later

I'm taking Vegan D3 5000IU daily. Sometimes 2x/day. Are you on 50k/week for life, then?

I haven't taken MG in a long time -- took a while to find pills that didn't constipate me. How would you know when your levels are sufficient? My blood serum mg levels were fine (2.2mg/dl [range 1.5-2.5]). Side note, I've been vegan for the last 4+ months and eat plenty of whole foods.

I've been taking the 50,000 IU dose for over a year now and currently see it as a lifelong thing. That's how much a difference it has made over the daily doses. I'm very surprised that magnesium caused constipation, as it has a well known effect of being a laxative. Maybe try a different type of magnesium. I take a complex that contains the patented Traacs complex. I find it is absorbed quickly and the effects are felt within 30 minutes, that being my restless legs calm down very quickly. You can't tell your magnesium level by testing the blood, as less than 1% of the body's stores are in the blood. It is almost impossible to get enough through diet, as soil levels are very low from poor agricultural practices, the same reason iodine is almost non-existent in the soil. For me, it's easy to tell I need magnesium as soon as the restless legs start jumping.