Looking a bit familiar

I signed up here to see if what I was feeling was anything like what others feel first off, and wow, all looking familiar. I started with very faint "numb"sensations in my left leg–but so faint I was embarrassed to say anything to the doctor. And then my face, again so faint I kept thinking it was all my imagination. I think I mumbled something about it to my doctor, a little embarrassed to be saying it and she either didn’t hear or take notice–she tells me I never told her about it. I had other symptoms over the years that I attributed to other things, but then bam! three weeks ago my leg was very numb (I hate using that word because it doesn’t really describe it–if I touch it I can feel it–it’s more like heavy). And all kinds of things started appearing from there on, still appearing progressively. I now often feel heaviness on the face, like someone was laying a bit hand on it, and weird headaches, especially in the front heavy, but little jabs all over too–that started at the temples, actually, and sometimes my ears feel plugged up like I’m in an airplane but hearing not affected, and sometimes it seems like there is a slight disconnect in speed when I move between me and the world around me–just a fraction of a second it seems. Then in the legs I was feeling pain all across my lower back and electricity down my legs and then the day yesterday while sitting in bed crosslegged at my bed table on my computer, I was feeling strange things in my two pinkies, more on the right one. The MS hug? I have been asking people for years if they ever felt pressure in their ribs–to me it feels like my organs are inflamed and pushing against my ribs. It has never actually been painful. Then, when reading about MS, I discover something called the MS hug! And then slight numbness in the arms. Sometimes I feel just disoriented and overwhelmed. I meditate regularly and can usually slow down my heart beat, but one night it seemed like their was a disconnect between my brain and my heart–like the calming command wouldn’t get through. And my eyes, it feels like something is weighing down on my eyes and that is related to the slight headache, pressure, all pressure and I almost feel like my vision is sometimes affected–and now suddenly my left eyelid is constantly doing something weird when I blink–can’t figure out what it is. Almost like an eyelash is touching my eye. When this first started happening maybe three weeks ago, my nurse practitioner ordered an MRI in the head. I didn’t realize this forum was in the UK, but probably no matter, but you might know that our medical system is broken–I’m traveling in a few days and it was impossible to find a neurologist who could see me within a couple of months, certainly not before leaving. I even went to UC Davis ER, hoping I could see a neurologist there who could explain the MRI better (it said MS could not be ruled out–which is the first time I related that word with my symptoms), and that failed miserably. My nurse practitioner pooh-poohed the idea that I would really have MS. But dang, I’ve never been a hypochondriac and KNOW that I’m not imagining this stuff. It’s really happening. So, guys, what do YOU think–is this how MS started for you? And if it isn’t, what in the world could it be?

Hi there, oh dear it sounds like you’re left to sort all these “little things” without a doctor joining the dots.

First of all these things might not be MS at all, but then, someone told you it can’t be ruled out. So you’re left in nowhere land, trying to make sense of something that you know isn’t right.

I’m unsure if you’re in the UK or elsewhere, but either way all these “little things” cannot be ignored.

I had quite a few years of “little things”& saw my Doctor (nhs England) a lot over 2 or 3 years. After seeing a Consultant Neurologist it took a few years for a confirmed diagnosis (dx) of PPMS which I’d never heard of.

For you, so far you don’t know what is wrong but you do know what isn’t right.
May I suggest you make a bullet point list of all the sensations, pain, restrictions, physical & mental (how they feel, what they’re similar to) etc and see a doctor with the list.

You may be referred to a Neuro and can take it from there. M.S may be ruled out or confirmed. Either way, you’ll find some answers.

There’s lots of great people on this site, a lot of experience and help.

Good luck!

Chrissie x

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Thanks so much for the kind response. It’s taken a while to get back to this site after I posted due to an out of town guest and traveling. I have, actually, done just what you suggested! I’ve got a list of about thirty weird things. The latest is some muscles on the inside of my knee moving on their own like some small animal writhing in there! I went to an ophthalmologist about my double vision and she is prescribing me prism glasses to help when driving. She had me moving my eye in rather extreme positions and tonight I am overwhelmed with eye pressure, a bit dizzy and a bit of nausea from that. A doctor told me that it was impossible that I should get MS at the age of 69. How many here are those who got it late in life? Maybe I should ask that on a separate thread.

I was diagnosed at 66, four and a half years ago, with Primary Progressive. Apparently I’d probably had it for 4 or 5 years before diagnosis

Thanks for your input!