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Autoimmune disease


35 replies

NoGoodUsernamee · 10/07/2022 18:46

Hi everyone. Writing a very quick post of my symptoms to see if anyone had similar before diagnoses of MS.

Just getting the kids to bed after a weekend of extreme anxiety worrying about this. I know no one can diagnose me but here goes… (I’ve had these symptoms twice now with approx 2 months beetween bouts.) thank you.

Starts with dizziness/light headedness

Second symptom is a numb/tingly left hand.

The tingling/pins and needles feeling then spreads to other parts of the left side of my body, arm, foot, leg, eventually my face & mouth. Once the tingling stops after 2/3 days, the pain starts. Like deep muscle aches from exercise in all the affected muscles. I also get random cramping in the hand and feet muscles, mildly with the pins and needles but quite persistent once they’ve gone.

OP posts:
NoGoodUsernamee · 10/07/2022 18:46

I’m a 30 year old female

OP posts:
11Hawkins · 10/07/2022 18:51

Could also be a vitamin deficiency or multiple other things I wouldn't jump to MS. You need to see your gp.

NoGoodUsernamee · 10/07/2022 18:53

Yes going to try tomorrow thanks @11Hawkins

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Roselilly36 · 10/07/2022 18:58

Could be so many causes OP, I have MS my symptoms were different to this when I suffered my first acute attack. See GP, when you have the symptoms, he will do a basic neurological exam and refer you to Neurologist if GP thinks it’s necessary. Which usually the next step is MRI, brain and full spine. The waits for neurology are very lengthy atm. If you need neuro opinion and can afford to go private, it’s worth it. Good luck, I hope you feel better soon.

NoGoodUsernamee · 10/07/2022 19:00

Thank you @Roselilly36

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weegiemum · 10/07/2022 20:40

You need to see the GP. There are a lot of neurological illnesses with similar symptoms (I have one of them) and the only thing that will help is a neurological referral. If you can persuade your gp to send you for nerve conduction tests (called EMG) or a head, neck and spine MRI that would help, but the wait is months and in some areas only consultants can approve these tests.

All the best. The best thing is knowing what is wrong. You can cope with anything head on. I found not knowing the worst.

NoGoodUsernamee · 10/07/2022 21:30

Thanks @weegiemum. would you mind me asking what your condition is if they symptoms are similar to mine?

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NoGoodUsernamee · 11/07/2022 18:01

So I saw a GP today who basically said ‘I wouldn’t jump straight to MS’ & whilst I appreciate it is probably worse case scenario all the symptoms do match up.

She done the simplest test (finger test, strength each side etc.) & concluded she didn’t think it was neurological but perhaps a deficiency or a reaction to a viral infection. (Even though I had the exact same symptoms in March?)

Im still worried - have to book a blood test. But sitting here with cramping in multiple muscles thinking this is not right.

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IdiotCreatures · 11/07/2022 18:07

Had neurological tests done by my GP recently, didn't find anything except I get double vision and pain in both areas of my peripheral vision.
Have been referred to Neurology before, after tingling started in one side of my scalp. They didn't take it seriously.
Hoping now that I've had five bouts of Vertigo and tinnitus, tingling in my feet and my groin (ongoing) plus this peripheral vision thing, the neurologist takes it a bit more seriously this time.
I won't hold my breath though.

forlornlorna1 · 11/07/2022 18:13

My first symptoms were vertigo and pins and needles in my face. First thing my gp did was check my bloods so that's good. My adult dd recently had similar symptoms and we were all worried but it turned out she was very low in b12 and iron. She's well again now.

Hope it all turns out ok x

NoGoodUsernamee · 11/07/2022 18:18

I had a blood test in March when the symptoms first appeared and they were normal so I have little doubt they’ll be normal again. But I’ll probably have to wait for another ‘episode’ to get any further 😔 I would love to just not have another one and be proved wrong! But my gut tells me that won’t be the case. She also said ‘MS symptoms wouldn't just disappear completely without leaving evidence behind.’ But that seems contradictory to what I read online where people have totally symptomless periods?

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NoGoodUsernamee · 11/07/2022 18:22

@forlornlorna1 did you bloods come back normal?

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forlornlorna1 · 11/07/2022 18:33

Yes all clear. It took four years for a diagnosis. I'd have bouts of vertigo and numbness but after the first couple of episodes it didn't resolve and I was left with a numbness in my face and hand. I was misdiagnosed with migraines for years

NoGoodUsernamee · 11/07/2022 18:40

@forlornlorna1 unbelievable how did it take so long? How are you doing now? Are you on medication? Has it worsened? How long have you had it? Sorry for all the questions…

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EinsteinaGogo · 11/07/2022 18:54

I could have written this myself, OP.

I've had dizziness, pins and needles in my face, mouth, left side and left leg for about two weeks.

First few days it was very bad indeed. I actually went to A&E after day 1'as i was worried about a stroke, and they kept me and did a CT scan.

That was clear and the did an MRI the next day.

That was clear too.
Not a stroke, not MS (according to them the MRI would have shown evidence?).

Bloods normal.

I'm referred to a neurologist and the symptoms have lessened but not gone away.

I wonder if there is a virus going around?

forlornlorna1 · 11/07/2022 18:56

It's ok but I don't want to post how things progressed for me as I wouldn't want to scare you.

It took so long partly due to the fact symptoms came and went. Then Covid. Then a very long neurology waiting list in my area (13 months).

I'm doing great now. I'm back on my feet after neurological rehabilitation and disease modifying drugs. I have a good MS nurse. No relapse since last summer 🤞

007DoubleOSeven · 11/07/2022 19:08

MRIs show MS damage as lesions so the fact that you're was clear is a good sign.

I understand your anxiety though.

I've just passed the GP neuro assessment so won't be referred onwards but I'm still unconvinced there's not something more at play. I suffer with severe fatigue, my bloods indicate inflammation, I get weird sensations in my neck...Frequent pins and needles and vibrating sensations in limbs, I've had the odd episode of lacking control over arm movements, seem to be experiencing foot drop and lose words and train of thought frequently...I don't want to push too hard because I think they'll mark me up as a hyperchondriac but think it's going to have to wait until I can afford to go privately.

Good luck, op, I hope your bloods show a defiencicy instead that's easily treatable. Try not to worry because these symptoms can also be triggered by acute anxiety

EinsteinaGogo · 11/07/2022 19:14

Ah, that makes sense @007DoubleOSeven.

I'm sorry you're still struggling for answers. Can you insist, or get a second opinion?

NoGoodUsernamee · 11/07/2022 19:26

I wonder if there is a virus going around?

Lets hope so. Sorry you’re experiencing the same. Although I am reassured you’ve had similar symptoms but clear results. Did/do you get involuntary cramps/spasms in your feet and hands?

OP posts:
NoGoodUsernamee · 11/07/2022 19:27

@forlornlorna1 thank you. I’m really very glad you haven’t had any relapses that’s fantastic. From reading I know the treatments are doing amazing things now.

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EinsteinaGogo · 11/07/2022 19:29

NoGoodUsernamee · 11/07/2022 19:26

I wonder if there is a virus going around?

Lets hope so. Sorry you’re experiencing the same. Although I am reassured you’ve had similar symptoms but clear results. Did/do you get involuntary cramps/spasms in your feet and hands?

Not cramps, Op.

Numbness and heaviness but not cramps.

007DoubleOSeven · 11/07/2022 19:31

EinsteinaGogo · 11/07/2022 19:14

Ah, that makes sense @007DoubleOSeven.

I'm sorry you're still struggling for answers. Can you insist, or get a second opinion?

Thank you @EinsteinaGogo

I might do, I'm having another round of bloods this week and will see what they say first. The gp I saw for the neuro assessment is a different one who I've not seen before and I had the distinct feeling I was being fobbed off 🙄

weegiemum · 11/07/2022 20:31

Hi there. My condition is CIDP - Chronic Inflammatory Demyelinating Polyneuropathy. It's a bit like MS but in my peripheral nerves. To be honest I'd think there's no point in mentioning it to your GP when I was diagnosed (each year about 1:2 million in the uk are diagnosed) my DH had been a doctor for 25 years and had never heard of it - qualified GP for about 18 years at that's vanishingly rare but somehow got me.

Reading back over your post it's less likely to be 5hat as your symptoms are asymmetrical, mine are typical for my illness in being the same on each side of my body.

Hope you get some answers soon!

PlinkPlonkFizz · 22/08/2022 03:58

This could be post-Covid neurological symptoms. Did you have Covid some time between July 2021 - Jan 2022?

Crikeyalmighty · 15/12/2022 15:30

I had identical symptoms OP to this. The dizziness was more of a weird light headed, disconnected feeling that stayed for hours and I was getting horrendous back of the head headaches too virtually every day. My right leg at times felt like it was either buzzing or encased in concrete, initially intermittent but at some periodsvirtually every day. I was100% convinced I had MS. Could not sleep as felt like I would have a stroke.

Only thing they could find was humongously high blood pressure and off the scale cholesterol (8.3) . I'm now on beta blockers and statins but still occasionally some days get the leg thing and the odd back of the head thing.

The neurologist did tell me that post covid they have more and more people with very odd disconnected symptoms with no obvious cause and they can't rule post covid inflammation reactions out- even if they didn't come on straight away (in my case 7 months!!)

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