Not really sure where to start, honestly. I've been having random issues for years- heat intolerance, dizzy spells, numbness/ tingling, slurred speech and confusion/brain fog that comes and goes, weakness in the arms and legs, EXTREME pain in my legs and joints. i wake up some mornings and my hands are swollen to the point that i can barely move them... it usually takes a couple hours for me to "wake up", regardless of how long i sleep. Intermittent insomnia (for example, I've slept a whole whopping 2 hours in the last 2 nights). Usually how my mornings go is that I'll have difficulty getting out of bed, sometimes needing assistance to pull myself up and out of it. I'll hobble around for a bit, then eventually it'll pass and I'll be able to move a bit better, aka the swelling will go down and whatnot. I was diagnosed with POTS a few years ago, once i regained health coverage and got the guts to be assertive with my doctor that something was wrong. But as I didn't respond to any of the medication favorably, my electrophysiologist (sic?) sat me down and told me i should see a neurologist.

Then I lost my health coverage... again.

Fast forward to now. I was working two jobs with between 40 to 60 hours a week between them for a good few months. My body ached, and i had all of my usual lovely things to deal with (dizzy spells, borderline passing out with dimming and darkening vision, stiff body, weakness, fatigue and all that jazz) but i dealt with it as best I could, because i needed the money desperately. Once the summer winded down so did my hours, which meant i could rest and recoup. I focused more on fixing up my new apartment rather than web development, and usually one would assume my symptoms would subside. Except they didn't. I woke up one morning with a bit more difficulty than usual, and i assumed that i had messed something up while trying to spiderman up the walls to paint above the shower. I couldn't walk easily on my own... if i went out to the store with my boyfriend, i would need to grip on to his arm to keep myself upright. my legs and body felt like they weighed a thousand pounds, which I've experienced several times before but not quite to that extent. I looked like i was several times my age while walking. I moved at the speed of snail, and had to pay very close attention to my steps, because if i didnt i would trip over myself, my knees would buckle from under me, or i would bump into everything. I put up with this for several weeks before finally seeing my doctor about it, especially after realizing that a lot of the things i was experiencing sounded like my friend james, who has been diagnosed with ms as long as i've known him.

I explained to him everything that I've been going through. Several years ago i had seen him for the pain in my legs and joints and he prescribed me every anti-inflammatory medication under the sun, none of which helped. But I never really explained my leg pain to him, because i didn't realize what i was feeling was out of the ordinary. it was like a vice was around my legs, or i was being stretched on an iron maiden. my muscles burned like someone injected them with bleach. there was a two week period a couple years ago, while renting a house with a couple friends, that i had to sleep on the futon downstairs because i couldn't physically get myself up the stairs and into my own bed. i had to buy a frame for my bed because even after that episode passed, i couldn't pull myself up in the morning... i told him all of this and more, and as i went to say "i think i might have ms," he was getting ready to say the same thing to me because he's seen it before. he ordered a few blood tests and a brain mri with and without contrast immediately. After i left there i went to pick up my prescription for adderall, literally the ONLY thing that has helped me over the years, and as i was struggling to walk back to the counter i saw canes out of the corner of my eye. Those things that i'd been avoiding for almost a month. I looked at them, but last minute just walked away and went home, because the last thing i wanted was to have a glaring sign broadcasting to every single person that something is wrong, mainly because i hate people pitying me and i'm a very, very stubborn woman. but as the day progressed, and the pain in my lower back got increasingly worse... i finally caved. a customer had left a cane behind a couple of months back in the store i work at, and my boss reminded me about it so i didn't have to spend money i didn't have. While its a few inches too tall for my 5'3" frame, the handle glows in the dark and it can collapse into nun chucks

I've had this cane for about a month now. I keep it with me at all times because despite my symptoms calming down a bit, i officially cant walk any kind of distance without it. my hands are still weak and shaking, which again is nothing new. But now i can't even use a screw driver without difficulty, because getting the tip on the head of the screw takes me a few minutes, and by the time i get the screw in my arms give out. I can't even draw a straight line. All of the bloodwork (lupus, lymes, ra) came back negative, and my brain mri came back clean. Oddly enough, they called me an hour after getting it done to tell me it came back fine...

I've done an ungodly amount of research on this, along with the symptoms I've been having since I was in my early teens. My memory, both short and long term, is nearly nonexistent. I used to draw and write stories daily, now i just stare at the paper and space out. While i've been diagnosed with several things in my younger years (first depression, then bipolar disorder due to my stepmothers urging the doctor i have it and depite my protests, then depression again, then adhd). I've been on what must be a dozen different meds for it by now, and they all just made it worse. But my main symptoms of "depression" were always a fogged mind, pain, chronic fatigue, and a detachment from my surroundings. I've done research on MS, which brought me to things like parkinsons and huntingtons. All three of these are technically hereditary. But seeing as I have no way of checking my birth mothers gene pool, I dont even know where to start.

However... i read online that huntingtons usually takes you in about 15 years. Both my mother and grandmother passed away at the age of 38. I'm 23 years old. I stumbled across huntingtons a couple days after my uncle told me about my mother/grandmother, and once the math clicked in my hea i actually laughed

I've been cracking jokes and keeping positive about all of this, because none of it is new to me. It's just frustrating because I don't know what to do from here. Seeing as my doctor didn't know what POTS was, I dont trust him to know everything. I also have a healthy paranoia and distrust of doctors; I'm the kind of person who wont take a medication until i do research on it, which my electrophysiologist and main doctor enjoy. Then again, I've also been reading medical journals and studying holistic medicine since i was in elementary school, so doctors either love or hate me. I have an appointment with a neurologist on Nov 21st, finally, after yeeeaarrssss of people telling me to see one.


tl;dr/summary: I'm 23 years old and can't walk unaided. Has anyone else gone through this before? Are there bloodtests i should be asking my gp for before i go to the neurologist? MS takes forever to diagnose, but huntingtons or parkinsons might be a possibility (not only because of the mental issues and trembling hands, but because my boyfriend pointed out to me that i do the "pill rolling" gesture constantly at rest, or when i'm nervous. I didn't realize that was a thing, it's just a tick i have). I dont want to come off as a hypochondriac, the main reason i didnt see a doctor about all of this and just dealt with it for so long. but now it's affecting my work, and im tired of the muscle twitches and burning. My brain just isn't "clicking" with anything, and the computer monitor is hurting me. please... help me. I'm going insane!

Bless your heart, you're only 23 and you sound like you've been around for 60 or 70 yrs.
Every symptom you described, including your clean MRI's and other mimicking ms tests that came back negative, I've had. My neuro and I were also thinking I have MS. (I'm 50, by the way). He had never seen me while I was having a "flair up," so, starting two weeks after my father passed (Sept. 21, 2013) my symptoms came back after being gone for only a month (I'd gone 8mths with my symptoms the first time they appeared). Last week he suddenly said, "You have Conversion Disorder (CD)." From what I've gathered, patients with CD mimic MS patients. How you get it is from bottling something up inside you and not coping with it properly. After a while of not dealing with it your body takes over, or "converts" your mental problem into a physical problem, thus causing the patient to have all these symptoms. Weird, huh?
Can I ask you, do you have any issues during the summer, or after a hot bath/shower?
Have you noticed anything that has happened in your life just prior to your symptoms coming on that causes stress?

I look forward to chatting with you. Who knows, maybe you and I will have our degree after all our research we're doing.