u/IamL118

Hello everyone! I just wanted to say I've been dealing with a lot of random health issues since around the age of 17 and I am still trying to put the pieces together, my symptoms don't really match with what I've read about hyperparathyroidism but my blood tests do.

I first started to experience peripheral neuropathy around the age of 16, by 17 it spread up my arms a bit from my hands and I got very worried so I went to the doctor. I got a blood test and everything was in normal range except my vitamin D was very deficient (7ng/dl). The doc prescribed me a high dose of vitamin D and sent me on my way. 3 months later I retested and it only went up to 10ng/dl. I was just told to go outside more and lose weight (I was overweight). Looking back though on these blood tests when my vitamin D was 7, my calcium was 10.1.

Over the last few years (now 25) the neuropathy has spread from a classic stocking glove pattern to body wide and random. I have patches on my forehead, back, back of head, knees, butt etc.. I also started to experience POTs type symptoms especially after eating large meals and random bouts of vertigo. I also feel like my memory is much worse and my muscles get tight and sore over things that used to be fine (like brushing my teeth, playing an instrument etc). Anyway I got a routine blood test a little less than a year ago and everything was fine except my calcium was now 10.8. Doctor didn't mention anything.

I am fully aware these symptoms could be completely unrelated as for the neuropathy I have been suspecting a potential auto immune cause like celiac, since some people in my family have it and it can cause low vitamin D and body wide neuropathy. But that is just speculation for now

But for some reason when I look back at every blood test I've got through the years, my calcium and vitamin D are very strange.

So I have two main questions:

1. Could I have really started getting hyperparathyroidism as a 16/17 year old? Kidney bloods were always normal.

2. My main symptoms are peripheral neuropathy, POTs type symptoms and memory issues. I don't experience any bone pain and I've never had kidney stones. Are these unrelated to high calcium?

Thank you.

Just to start I wanted to say I know this is just a subreddit and not a medical exam haha, and I am planning on getting to a doctor soon about all of this once I sort some things out but just wanted some advice!

In my early teens i started noticing that in the mornings my feet would feel hot or cold and tingly. By my late teens it spread to my hands and I would have bouts of it creeping up my arms as well.

The tingling and pain was not constant but the slight numbness was at that point. So around the age of 18 I went to the doctor about it for the first time and they diagnosed me as pre diabetic and said I had anxiety. Doctor recommend a lifestyle change as I was overweight. I lost a lot of weight over the next few years and was no longer pre diabetic, but the SFN still seemed to progress in subtle ways.

The foot burning would get particularly bad after eating heavy meals or getting drunk, even though by that point my A1C was normal, same with fasting insulin. Every year that passed it seemed like the numbness and pain in my hands and feet slowly got worse, with some periods of remission.

By the age of 23 I noticed it creeping up my legs to around my knees. That same year out of nowhere I had a horrible 1 week bout of vertigo/ lightheadedness and brain fog I went to the ER and even got a CT scan and some blood tests and once again they recommended weight loss anxiety management

After that bout of vertigo for the rest of that year the numbness/ heat/ tingling traveled all the way up my arms and even to my forehead. I started experiencing head pressure, random small muscle twitches, sore feeling muscles, TMJ type pains, and bouts of vertigo and POTS like dizziness and heart racing when standing. I also notice by that point If I rub down the side of my arm in line with my thumb it sends a shock to my hands this happens on both sides and happens with my feet when i rub down my ankle.

I tried a clean ketogenic diet for the first part of this year to see if it was a problem I was having with sugar.

The diet didn't help my nerve pain/ numbness but it did seem to stop the periods of head pressure and vertigo.

These sensations are at their worse when waking up in the morning and after eating large meals especially when carb heavy (but even ketogenic large meals trigger foot burning and forehead numbness sometimes). Also after eating I will sometimes sweat a lot, get lightheaded and feel all of the symptoms I talked about earlier double.

Because I at times experience vertigo, brain fog, muscle soreness, twitches and eye pain with light sensitivity and facial numbness in forehead I am very worried that I have Multiple Sclerosis.

But the symmetrical nature of the pain/numbness, relation to eating and drinking (possible blood sugar involvement?) and the autonomic dysfunction makes it sound more like SFN.

TLDR: 25M Have been dealing with slowly worsening symmetrical nerve pains (starting it feet but now almost body wide) since a teen. Triggers seem to be eating large meals and drinking alcohol. Currently not pre diabetic/ diabetic but was pre diabetic in the past. Also over the last few years started dealing with autonomic type dysfunction (POTS, excessive sweating, digestive issues) and MS like symptoms (muscle soreness, vertigo, muscle twitches, brain fog, eye pain, light sensitivity and facial (forehead) numbness). Dose this sound familiar or is this more in line with MS?

Thank you for your time.

First things first, I want to thank Dr Powers for the amazing work he is doing for the PFS/PSSD community! I truly could not be more grateful that someone is putting in this much effort into figuring this all out.

Secondly, I would like to share my story to see if this could fit into Dr. Powers theory of PFS as i have not seen many "post drug" minoxidil sufferers here.

I am a 25 year old cis male who has been suffering from post-drug syndrome for 5 years. I got a whole host of issues after using topical minoxidil for about 5 days in 2021.

Long story short I stupidly got on TRT at the age of 19 as I wanted better gym gains and a hormone test at my local men's clinic showed I was on the low end of normal for testosterone (that I now wish I just addressed through natural means as I felt completely fine at the time). Second mistake is I got off of TRT 6 months later cold turkey, crashed my levels and then got back on with the intention of tapering. Third mistake is in this hormonal mess I used 5% minoxidil for just 5 days and ended up with all of the classic post-drug syndrome symptoms since.

In the following months I was able to get off of TRT with the help of tapering and using HCG and had a "normal" hormone test showing I was making my own Testosterone again.

Though at that point my hormones where on paper now normal I have still never felt the same after using minoxidil.

My symptoms are as followed (I'll only name the most debilitating for the sake of brevity): Anhedonia, de-personalization/ de-realization, depression, anxiety, loss of connection to emotions, brain-fog, memory loss, ED, loss of libido, penile pain, penile shrinkage... the list could go on. Anhedonia and low libido being the most debilitating.

I think these specific circumstances of messing with testosterone probably contributed to this happening to me as minoxidil is less known to cause issues on its own (though it can r/MinoxidilSideEffects). But I am certain it was minoxidil that was the "trigger", as I didn't feel bad before TRT, during TRT or even when getting off and on. But it was those few days of use that caused these persistent side effects so quickly. I remember the Anhedonia starting as early as day 3.

Not all is without hope as I have overtime somewhat "stabilized" to a somewhat functional level, though I am nothing of my former self. I have had windows of near full recovery while trying certain herbs, and pro-hormones though most of this was throwing shit at the wall and the periods of being "cured" would usually be followed by crashes.

The strangest occurrence was when I contracted appendicitis, and the day before and after I had my appendix removed I had a near (95%) full recovery. It was followed by a 3 month "afterglow" of feeling much better, and I've never known what to make of that.

After the 3 year mark I stopped trying anything for this condition but have still went through periods of feeling better or worse but they are much less drastic as they were early on and I am mostly in a "meh" state... but recently I had a full recovery of my libido for a week just because I abstained from sex for a few days (though doing this in the past had no impact) and it just got me thinking about this condition again. From there I found this sub and learned about the wonderful work Dr Powers is doing!

TLDR: I took Minoxidil 5 years ago for less than a week and it left me with all of the classic PFS symptoms. Around the time I used minoxidil I was on and off of TRT and I believe that could have put me in a vulnerable state. I have had windows of being cured since but always comeback to a poor (but slightly better than the beginning) baseline.

Stay strong everyone.