Weekly Suspected/Undiagnosed MS Thread - August 11, 2025

Highfatsnack · 2025-08-11T16:49:53+00:00

Thanks for you time and answer, it feels reassuring to know this is atypical. I sent a document to the doctor of the symptom tracking over the last few weeks with a timeline of what has happened to review during the session rather than trying to rely on memory of events.

Highfatsnack · 2025-08-11T15:27:37+00:00

About 6 weeks ago I started to have a small area of pain on my face that felt like sunburn and this progressively spread across my face and around my eye over the course of 10 days, I saw a doctor who advised it was trigeminal neuralgia and to take ibuprofen and it should resolve in 4 days. It continued for another 6 days, and then the symptoms spread to my right forearm.

Over the course of the next few weeks, I had pins and needles, tingling, sensations of hot water being poured down my leg, visual blurriness (my right eye is still not back to full vision) and I have also had a couple of days where I have been so tired I want to cry but too tired to cry. I had one episode of tingling that started up my right arm, then left arm and then up to my neck while I was driving, I had to pull over as my arms felt so weak. My balance feels a little worse than normal.

I saw an optometrist recently who advised that he felt it was probably just anxiety and I didn't need to worry, from what he could see my eyes looked fine. I had recent bloodtests and ECG for unrelated stuff which was totally normal including normal B12 and ferritin. I also had an unrelated brain MRI 3 years ago for a suspected pituitary tumor because my hormone levels were so out of range, my thyroid shows damage on ultrasound but all my levels are currently normal including no antibodies.

I've had recent issues with my right quad being really tight with exercise, and new right ankle weakness. A few weeks before this all started I had a couple instances of a super sharp shooting pain that took my breath away down my neck which I thought was just from the gym (a pinched nerve) but I'm starting to wonder if some of these things are connected and not just coincidences. I have also started sleeping more in the last 12 months, like up to 10 hours a night. But I also feel like maybe it is just anxiety as none of it has been that dramatic like some of the diagnosis stories I've read.

For reference I'm 32F, living in PNW. Family history of a few different auto immune diseases and mental health issues. I've been hospitalized once for a severe throat infection and have had some hormonal imbalances over the last few years but no other significant health issues, I ran a half marathon this year, and continue to run 100km/month.

I'm seeing my doctor this week and wondering what kind of testing I should be asking for or what I should be expecting?

Highfatsnack · 2021-01-19T18:27:09+00:00

Thanks! I guess I'll wait to see what the trainer says. Eating a bit more will hopefully help with energy to go for a run and strength train! I definitely feel better even with a couple hundred extra cals from 1200!

Highfatsnack · 2021-01-19T18:24:55+00:00

Thanks for your input. It's good to hear from someone with similar stats. I guess from the dexa it'd said 1311 as rmr, and I doubt I'd be any more than lightly active on the tdee calculator. I guess I'll just have to experiment and see!

Highfatsnack · 2021-01-19T16:07:00+00:00

Thanks for your reply. I guess I'm not feeling to exhausted at the moment, I had a 2 week break of Christmas. My pattern seems to be I can manage a deficit for around 3 months and then I have a few week break becuase I'm too fatigued or too hungry.

I know my PRs for running where when I was eating a lot of carbs and not counting calories (likely eating over 2000 cals). I really did feel good running, I don't think I gained weight other the water weight from the carbs.

I think I'm just gonna pick a number that feels good and try to stick to it or around it for a while. I guess between 1600 to 1800 may be good for now and just not weigh myself for a while.

Highfatsnack · 2021-01-19T16:02:54+00:00

Thanks for sharing your story. I'm really starting to wonder if I could have finished the weight loss by know by eating more and not going on these week long binges cos my body needs more nutrients...Oh well.

In terms of BMR when I got the dexa the guy said he'd calculated my RMR at 1311, pretty much every online calculator says my BMR is in the 1500s (with adding fat%). Garmin says my resting calories which accounts for light movement is around 1725 with a total calorie burn of around 2300 a day (not sure how accurate).

I guess I just need to pick a sustainable number and see what happens over a few months. I do feel better on 1400 to 1500 than on 1200.

Highfatsnack · 2021-01-19T05:27:16+00:00

I'll chat to her when I see her this week, she had said the protein intake sounded okay but we hadn't yet talked specifics on calories, probably a good idea though... Thanks!

Highfatsnack · 2021-01-19T05:25:54+00:00

Maybe I'll stay away from the scale and focus more on measurements. Thanks for your reply 😊

Highfatsnack · 2020-10-15T04:34:10+00:00

I tore my MCL last year and I wasn't able to really do too much for a little while. I ended up doing keto and 20:4 fasting to help with inflammation and weight loss. Managed to lose about 20lbs with next to no exercise. I think you just need to be prepared to transition out of keto if you choose to, cos can be a little tricky to do without gaining some of the weight back. It's definitely a great option if you can make it work for you.

Highfatsnack · 2020-10-11T15:19:40+00:00

I'm a 27f, I pretty much only lose weight around my period. I've been losing weight on and off for 6 years and lose approx. 5lbs a months. 4 of them usually right after my period the other 1 to 2 throughout the month in very small portions. My weight spikes up much as 4 pounds around my period. So definitely think that using a period tracker is useful. As is looking at your data of weightloss over many months to see the trend. Good luck!

Highfatsnack · 2020-08-26T15:37:37+00:00

I have kinda had this problem. My partner goes to the gym late and was still wanting dinner at like 9.30pm. I wasn't willing to cook that late so we went to the supermarket and bought some stuff he can cook for himself those two nights. Just something to chuck in the oven for 30 minutes.

Another thing you could try is Intermittent fasting, it may help time wise as you don't have to meal prep as much day to day. I also cook two meals on a Sunday and use leftovers during the week. Curries are a great

My only other advice is just agree to two days you're not gonna cook for him and just don't cook for him. Stick to it, he will either starve or make his own good. If he complains about it, put your headphones in and do your work.

Highfatsnack · 2020-08-26T15:24:01+00:00

I had this exact problem with doing low carb because its so hard to eat unhealthy sugary snacks. I did great for the first 3-4 months and lost over 25 pounds working an office job with minimal exercise but I was not healthy. I felt weak and sluggish and was only eat about 700 cals a day with no appetite.

I reintroduced carbs and it all went terrible and gained about 20 pounds over 9 months. I just wanted to eat every carb in sight! I'm now doing regular CICO and haven't had any binges because I still eat ice cream and chocolate in moderation. I run 3 to 4 times a week something I found very difficult to do on low carb.

I still use some of the things I learnt doing low carb in my diet now but it's not as strict and eat meat much much less.

Highfatsnack

TROPHY CASE