Last reply 2 years ago
What were your early symptoms?

Hi all,
New here. Trying to cope with my doctor telling me she wants to “rule out MS” with an MRI scan, but having to wait weeks – potentially months – for that appointment. My symptoms are driving me bananas – mostly tingling, a feeling of tightness and burning in my feet, hands and neck, general pain and discomfort in my neck, back, shoulders and arms, itchiness on one side of my face, difficulties with balance and weakness on one side. I have had “double vision” for years, diagnosed as a deviation by an eye doctor and corrected with prescription eyeglasses that are no longer working. And I’m tired. So, so tired.

I had numbness in my back several months ago that my doctor suspected was a pinched nerve. Sent me for physio. Things got better – but now the numbness is back there too.

When I google these symptoms, MS comes up. But I’d like to hear some real life experiences… what were your first symptoms?

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stumbler
2 years ago

Hi @meebes87 and welcome.

Your symptoms are suggestive of MS, but unfortunately, those same symptoms are also present in various other conditions too. We’re quite complex really.

You seem to have little other choice, but to weather this storm out and wait for the sun to reappear. Stressing about the situation only makes everything seem worse, and actually get worse.

Just be kind to yourself for the time being. If you feel tired, then rest and just look after yourself.


marcyg921
2 years ago

Try and stay off Google when it comes to health, I know its hard but it’ll only worry you more so best to just be patient and I’m sure the Doctors will eventually get to whats wrong with you but MS is not an easy thing to diagnose as it took me 11 months and multiple tests to finally get the answer. As for my first symptoms, well I woke up on Christmas morning with a weird feeling down my left which got diagnosed as a trapped nerve but even though the arm healed, my hand didn’t and I was struggling to use it ( no feeling in my fingers, got insanely itchy and it used to claw up).
My next symptoms were limping for no reason and the weird feeling down my arm was now down my entire left side of my body and my balance was getting worse along with some bladder issues and I was just making every excuse as to why this could happen. It wasn’t until I had my 1st MRI scan that I realised that something was seriously wrong and that it wasn’t all in my head. Oh I also got pins and needles in my right shoulder.


nutshell88
2 years ago

Childhood before daignose i used to have floaters and visual snow. I began talking in young age maybe 6 or 7 months.
And get full grades when i went to school.

2005 MS daignoses age 17 it was optic nerve i got blind in right eye. Parents dr hid it from me.

2010 i began rebef then after shor while got second relapse. Was vertigo was hospitilise due it.
a lot of symptoms were happening repeatdly after weak shaky legs hands lost ability to taste in half of my tongue double vision and didnt know its a symptom. I stopped rebef then they stopped. Till now only minor once now and they get healed alone. :)))


mrsclumsy
2 years ago

Very blurry vision, limping on right leg, balance, weakness. First was thinking just cold till my limping wouldn’t go away


meebes87
2 years ago

Thanks for responding. Dr. Google is dangerous, I know, but I have had these symptoms on and off for close to a year now. Had an MRI of my back in May to rule out spinal stenosis, which came back undiagnostic – just a few minor disc bulges that my doctor suspected were pinching a nerve in my back, which is why I did physio. So now I am waiting for the brain MRI, and the wait could be very long – and in the meantime, I am left with absolutely no way to mitigate my symptoms – OTC pain meds don’t work to relieve the pins and needles/burning/itching/tightness, I try my best to go to the gym regularly to try to improve my strength but it’s a hard thing to do when dealing with chronic pain – not to mention the fact that I can’t sleep due to all these symptoms. Definitely starting to feel a little crazy, wondering if this isn’t just what it feels like to age (not that I am old – 30), and feeling like I should just stop running to my doctor to complain. And it’s not even like the pain is excruciating, it’s more of a discomfort than anything else really, but the thing about pain is that it doesn’t need to be excruciating to be debilitating. After a while it just drives you nuts. My heart goes out to all of you who have gone through this process of getting your diagnosis, what a nightmare.


stumbler
2 years ago

@meebes87 , have a read of this :-

https://www.mstrust.org.uk/a-z/altered-sensations

Then, you can refer to this when you go running to your Doctor to ask for some relief. 😉


celan2go
2 years ago

Very early symptoms (like 10+ years before I finally has full-blown MS) tingling down both legs, unable to run. at the time of my diagnosis – tingling and weakness on my left side, some general weakness,those ere the main symptoms. Diagnosis verified by MRI.


mhworden
2 years ago

Lhermitte sign (electric shock feeling) down left leg when I’d move my head a certain way and chronic left shoulder pain that I thought was a pinched nerve. Diagnosis by contrast MRI. Getting a right diagnosis is a good, then you can treat the right thing!

Note not all symptoms may be related to whatever your diagnosis turns out to be. While my left hand is permanently numb, the shoulder pain finally resolved through Intramuscular stimulation (IMS) (basically acupuncture with bigger needles).

Hope you get in for your MRI quickly and you get the answers you need. Take care.


tish22
2 years ago

Quite a few years back, I experienced a numb feeling in one side of my face. That went,then I had strange sensations in my body like when I was in the shower the feeling of the water on my skin was peculiar. That went, then last year after having my son, I noticed pins and needles in my hands and feet. And I still have it to this day. I get slurred speech,loss of balance & light headed.


dawn13
2 years ago

Hi @meebes87. I am very new to all of this myself, just diagnosed Oct 3. My symptoms came on all of a sudden and very severe 8+ months ago. One day I was fine then bam… it hit me. Started with just feeling really off and not myself, brain fog, confusion, not clear headed at all, dizziness, lightheadedness like I am going to pass out when I look down, then my heart starts racing. Tingling in shoulders/back and right leg. Blood pressure goes way up, then heart rate drops. Pressure in ear which screws with hearing, buzzing/ringing in head. Took me going through the “Proper” channels of doctors.. cardiologist, PCP, ENT, (all thought it was “all in my head” or anxiety) finally Neurologist at the beginning of Sept. He started with MRI/MRA right away-which I was able to do back to back, then spinal tap and blood work, then MRI on T&C spine-also able to do back to back. His receptionist is wonderful with getting approval from the insurance company within 24 hours for each of the tests which really helps with moving things along.
Stick with it! Be persistent and insistent with the doctors that something is wrong. Good luck, Take care!
Dawn

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