Not yet diagnosed but feel like everything else is slowly being eliminated

Everyday living
1

Hi all. Im 36 yr old woman and feeling on one hand like I’m not crazy and all these seemingly random symptoms I’ve had off and on for a few years suddenly make a lot of sense but then also maybe I’m just making it make sense and its not really there.
Ive been seeing a neurologist since a little after march because I had an episode that doctors believed was a TIA. What happened was I was at work and just started feeling off and my face, hand and leg on right side of body went tingly and numb. My coworker said I was slurring and got me medical attention. I went to ER and stayed overnight, was deemed a possible tia, since I also have had migraines since forever. My neurologist has saud it was a tia but still seems unsure of it because they have found absolutely zero cause for it. Ive had 3 mri’s since then. The one immediately after the episode showed nothing, one in June showed a few white lesions that on the findings had a long list of what it could mean my neurologist said it was likely just because I had migraines and we just went on with it. I since then developed a hand twitch that is fairly severe so she wanted another one, this one showed more lesions but i have not seen my neurologist to see what she says the new ones are in the periventrical (sp?) region. She also ran a bunch of blood test to rule things out. My thyroid is good, dont have lyme disease, or wilsons, my iron is good, b12 is good, vitamin d is currently doing well which is good because I was told I have a genetic deficiency so I have to take it daily. It was once weekly because it was super kow a few years ago, one thing that was abnormal was gamna globulin but all other blood test were normal. Just had an emg and it was normal or good, however that is supposed to be said. Ive done some pt both on my neck/shoulder for pain there and for lower back and legs in case of sciatica. The ones for sciatica havent seened to help with the tingling that I get in legs. I compiled a list of all the symptoms I currently have and that have just been happening off and on for a few years and now seem to be severe. I also went to er recently because neurologist nurse told me to because the leg tingling hadnt stoppec for several hours. They did a ct and it was good and gave me a round of oral steroids. Im not sure that they helped much. I mean maybe a little but I just don’t know. The doctor there suggested ms. The one that did the emg also suggested ms. So in a way I feel like maybe im not being a hypochondriac but idk. Maybe theres still something im just missing and im adding this all up to be ms when its some easy explanation. Anyway heres my list of symptoms, I hope my neurologist doesn’t think I’m crazy when i bring it along at my next appt which at this point is what im waiting on.

Hand twitch/tremor and sometimes it’s tingly.

Feet tingly sometimes numb. More the right then left but left has been affected lately. Started only when sitting like they fell asleep but happens while standing as well. Has gotten to where I am afraid of driving long distances. This now included sometimes itchy, sometimes, burning or if I’m “super lucky” a lovely vibrating feeling.
Or about lovely feeling like someone zapped me with electricity, or at least that’s the best way I know how to describe it.

Sometimes tingly not numb on right side of face

Extreme fatigue, I’ve been diagnosed with fibromyalgia but this exhausted is different like i have to at least sit down if not lay down when it hits.

Almost constantly feel like Im going to trip while walking. Sometimes my feet feel like I’m wearing concrete shoes. More right than left, I think.

Have to put hand out when turning corners or really just walking I run into things. I sometimes worry people are going to think I’m drunk.

Often feel off balance like I’m going to fall over, not necessarily dizzy

Do get bouts of dizziness, thought it was tied to turning too quickly but I’m unsure now

Will get a squeezing sensation around my chest, rib area like a vice makes it feel like I can’t breath. Get sweaty and have to sit down let it run it’s course. Feel absolutely exhausted afterwards, no panic is involved. Have had all sorts of heart tests run. All clear. (Literally just had one of these in the shower, that was super fun)

Have bladder issues, sometimes do not quite make it to the bathroom. Have been told nothing is wrong probably just have pelvic floor issues

Get issues with constipation have tried to figure out food triggers with no luck.

Feel like i get irritable easier

Trouble with words. Not remembering what things are called and sometimes saying certain words

Heat makes me feel nauseated and sometimes lightheaded whereas cold just hurts. Mostly my hands and feet i can not stand anything cold on my hands without a lot of pain. They tend to turn white quickly. Was told may be Raynaulds but was never really looked into.

Do not shower without a shower chair as I often start feeling weak.

I think thats all for now. I really just needed a place to get it all out snd here seens like a safe place. Thanks to anyone that listened.
Also apologies for and misspelling and like. I went back through and checked everything and also it took forever just to type this, I feel very dumb sometimes.

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I remember that when I was first being investigated for whatever was going on, I saw the neurologist and he explained that my MRI scan showed some white spots on my spinal cord, and the lumbar puncture evidenced some previous neurological damage. He explained that I had what was known as clinically isolated syndrome, or basically a single sclerosis episode. He suggested that if they looked for it in all autopsies they’d find it in most people and that I should carry on in the hope that I don’t have any more episodes. Six months later I was starting to have trouble with fine motor function, so things like picking up pennies, and when I saw the consultant he explained that as this was a different symptom in a different place at a different time that I now had multiple examples of neural damage, so it was no longer clinically isolated syndrome but was now actual multiple sclerosis. He probably could have diagnosed me in the first instance, because the lumber puncture showed I’d had at least half a dozen episodes. I think the difficulty was that I hadn’t actually noticed any of them so couldn’t confirm prior relapses otherwise he probably would’ve diagnosed me then. I think what’s strange about ms is how no two people have the same symptoms, so comparing notes with somebody else can sound like it’s two completely different illnesses and sitting around the table with a few people with MS can be like playing snap! That’s probably why everything else has to be ruled out first, and why it can take awhile to get a diagnosis. Your GP is the one who needs to be pushing for a diagnosis, not having a diagnosis of anything doesn’t mean that there’s nothing wrong, so I would try getting in touch with them so they can explain what they think is the next step. But make sure there is a next step and a plan in place. Lumbar puncture might be one of the next tests they perform, if they think it’s necessary, but they really need to do something. It’s easy to feel paranoid, because you really are hypervigilant about anything that could be a symptom, and then that can make you feel like a hypochondriac, and all of these are things that were told are very negative and that we should not be like that, but when there really is something wrong that’s exactly how you should be. Yes, you probably wouldn’t notice most of the symptoms if you didn’t feel like there was something wrong, but that doesn’t mean you shouldn’t notice them. Be confident, be demanding, and be a pain in the ass. If you get diagnosed eventually with something trivial then nobody is going to complain that you wasted their time, they’ll just be delighted to close your file and move on. Get your GP to do some of the worrying for you, and if it helps try and imagine that you were the mother of somebody in your position and what you would say and do. It’s not easy asking for help for yourself, it’s much easier being bullish on somebody else’s behalf so take on that role.
Good luck, and be kind to yourself