Help ease my mind

[Missymutt]

Help, before I go making a big deal out of a bunch of little things I'd like your opinions. Sorry it's so long I need to get this all out, I feel like I'm going crazy. I don't know if it is just in my head or not. My faith and trust in doctors is almost nonexistent thanks to some bad childhood experiences.

About a year and half ago, I was 17, and it was about September. I started noticing I was getting headaches almost every. Like my eyes were straining and tired. I thought I just need my prescription changed, but my eye doctor said it hadn't and that I should mention these headaches to my doctor. Over the next few months they got worse, headaches turned into migraines. I'd walk around in a daze, ask a question twice within a couple minutes, forget what I was looking for, jumble my words together, all those little things people catch themselves doing only way more often. I'd feel like I was moving when I was sitting still, like on a boat. I'd feel that way in a vehicle, not like being car sick, (though I'd always have the worst migraine by time I made it home) like I was moving inside it, while it was moving in whatever direction we were going. Then spring comes, i'm now 18 I finally go to the doctor. I had been having these aches and pains in my legs kind of numb but like, cramps that'd come from nowhere. She had a cat scan done because the headaches were getting worse and she was kind of worried. That came back clear. She referred me to a neurologist and the next available appointment was 5-6 months away. Guess what, the headaches start to get better, still almost daily just not as severe. It's August, I think I have a toothache, that comes and goes. I try toughing it out, I make 4 days but it's a burning ache with a sharp throb and the occasional burst of hot needles. I go to the er at 10 pm, terrified they'll turn me away because it's a tooth and they don't handle that, to find out I have trigeminal neuralgia. I looked that up and found out it's uncommon in people my age. That it's linked to ms, I had no idea what it was so I looked into it a little and things just seem to keep adding up, so I looked harder but back to the story. Over the summer the headaches got better but I got dizzier. I'd stumble over my own two feet I was always uncoordinated but not like that. I almost thought I was getting heat stroke and because the hotter it was the worse I seemed to feel but I never had any trouble before with it. I went my doctor to get my prescription and update her on the TN she seemed to think there was something more to it also even though I hadn't said anything. She checked me over and when she had me fallow her fingers my eyes shook. I was sent straight to the eye doctor, who said he couldn't see it, but ordered a Mri anyway. That came back normal. ( I read they can be normal in the early stages, so that didn't help much.) October came I went to the neurologist, I brought up the trigeminal neuralgia he brushed it off. Only talked about the headaches which are manageable and the dizziness which, he said is a migraine without the headache. He put me on something for them and I'm due back in April.
Here are the symptoms I think I have.
•I go numb in my legs and arms very easy to point I can't stand
•I had bladder issues. Where i'd get the urge to go really bad and dribble before I made it to the toilet
• vision disturbances flickers floaters
•things are crawling on me feeling goes with numb I know
•speech issues things don't come out how they should even with a lot of thought
•joint pain my ankle knees and hips I feel like an old lady
•tired
•weaker I'm a strong girl but it feels like I lost a lot of my strength but I'll admit I'm not doing as much as I did before to stay fit.
No, they're not all happening now or at once but I read up on ms beacuse of my tn and these are what stood out to me at least what I can remeaber going "hey that sounds like me!" Honestly I think there's a couple others but It is 12 am and im falling asleep writing this.

[jimmylegs]

hi has anyone ever referred you to a dietitian or nutritionist? do you have a sense of whether your typical diet meets recommended daily amounts of essential nutrients for your age and typical activity levels? ms patients are low in a few vitamins and minerals - couldn't hurt to rule them out as factors in your case

[Missymutt]

Hi, no I haven't been referred to one. I'll admit I probably don't get the nutrients I need. I had a good amount of blood work done when this first started and all was good except my vitamin D and I've had problems with it before. I'm not sure what else they checked for vitamins and minerals.

[jimmylegs]

ok well if you start with working on nutrition, you may find some of your symptoms clear up. always a good idea going forward, so that the doc has a clearer picture of what is going on that is NOT related to nutritional status.
standard bloodwork typically doesn't look at many of the essential nutrients. do you have, or can you get, your own copies of the tests that have been done? could be informative to have a look at those.
if vit d3 was low when you were tested, it could suggest that some cofactors are low as well. curious if you have you taking vit d3 and if so, how much? have you taken any other nutritional supplements over time?
may i ask what have been the most common factors preventing you from getting the nutrients you need? will be good to know, in order to figure out the best way forward