Multiple sclerosis?

[spaceintime21]

Seeking some advice from people who have MS - Does this sound like ms to you?

April - felt a sudden electric shock in my body, mainly legs. After this experienced strange body parathesia such as burning sensations, cold and hot were off, tingling, pins and needles, pin prick sensations. Lasted about 3 months and settled. Head and spine mri normal. Bloods normal.

August - woke up with a numb and tingling patch in my left arm. Left leg is buzzing and vibrating, been constantly like this for about 4 weeks.

What do you think?

Ask about other health issues too. Lots of neurological diseases, but can test for other things too.

From what I know, an MRI will quite clearly show some areas of demyelination if you have MS that is advanced enough to cause you symptoms like that?

I agree it could be something else, could you book an appointment for a second opinion.

@sparebooks this is what one doctor said also, which I took on board, until the second episode happened.

They never really said what else it could be though as the tests were normal. Not sure if there's any other tests that can be done but really feel like something is wrong.

lesions would show up in an MRI if it was Ms so I wouldn’t worry about that.

Hi, I have MS.

When I was getting diagnosed and googling every “symptom” I ever had Dr Google would always come out with “or it could be MS”. Interestingly I’ve had a few episodes of symptoms like you describe and thankfully no new lesions on the MRI and my neurologist says they are likely to be caused by other things and are not MS related. Stress being the biggest one.

My MS nurses always say if there’s a cause or cure for the symptoms they are not MS - for example if you can shake out your pins and needles, or you wake up with a dead arm from sleeping on it - it wouldn’t be MS.

How are your vitamin levels? Low B12 can give you symptoms like you describe and is also very common in women. Start on a high dose of vitamin d3 (approx 2000- 4000iu a day) If you still suspect MS, it won’t do you any harm but certainly will do you some good if it does turn out to be MS.

MS literally means “multiple scars” and is the medical name for having areas of demyelination on the nerves so a clear MRI is a great sign for you.

happy to answer any questions :)

MiL diagnosed with MS.
GP and neurologist suspected immediately and scan confirmed.
She had alot of symptoms that got worse over time.

@BathsAreBliss hello. Thank you very much for responding.

I can't shake it out, the vibration is constant and the tingling is also pretty constant! This is what worries me.

May I ask what symptoms you experienced before you were diagnosed? How are you doing now? I hope you are ok and it is well managed.

B12 levels were all normal. Along with iron etc. they tested for diabetes and that was normal as well. I have another appointment coming up with my neurologist but I'm super worried they have missed something serious.

My DD was diagnosed last year at age 17 with MS. At that time she had tingling and numbness on her whole her right side, and a high contrast MRI did show lesions in her brain and spine, and a lumbar puncture compared to blood results confirmed it.
However. She has had unexplained pain, particularly in her shoulders and arms, for years. She also gets migraines with pain that radiates down her neck and arms (could be coincidental). She had always been a bit clumsy. Since she was 13 she has been to various doctors, chiropractor, physio, had acupuncture, EKG, ECG and so on. Two MRIs (one private at age 13 as the wait was so long). Nothing - including meds - helped and nothing on the MRI - but they were not high contrast. The current consultant did see one of the old MRIs and couldn't see any lesions either, but again, maybe because it wasn't taken with a dye? She's had three in the last 18 months and the first one saw active lesions and old scar tissue, the more recent one decreased in size but one new one.
MS is diagnosed by elimination. The MRI and lumbar are the best indicators.

@spaceintime21 I was 29 (4 years ago) and a few episodes of my left side going completely “dead” is the best way to describe it, I could use my arms and legs but they felt like I’d sat on them and really heavy. Only lasting a minute or so then completely resolving. I was sure it was anemia, I don’t eat a lot of meat, and felt a bit tired all the time.

Dr sent me to the stroke clinic(!) the same day and MRI with contrast later and I had a lesion in my brain, they gave me the Covid vaccine 4 months later as a control test and it caused another lesion… diagnosis quickly followed and I started a DMT called cladribine, which was a tablet a day over 5 days repeated for 4 weeks over 2 years (2 weeks per year). (I also had a lumbar puncture in that 4 month wait which was clear).

I am grateful to be doing well! I am completely mobile and active, to look at me you wouldn’t think there was anything wrong, l work full time, getting married next year & planning to start a family soon after. The treatments available now are honestly incredible, I’ve had no progression or disease activity since starting treatment, the NHS is incredible & very supportive.

j do occasionally get the MS hug, and I actually got these when I was a child but i didn’t know what they were, like awful indigestion, or someone tightening a strap around my rib cage. I also had really bad glandular fever as a teenager. Other than that I didn’t really have any signs or symptoms before diagnosis. I’ve had a lot of sensory symptoms since, muscle twitching and skin burning or tingling but my nurse and neuro don’t think it’s linked to my MS at all.

I wish you all the best, no MRI activity is really positive for not being Ms. I hope you get answers soon 💐

@mondaytosunday oh bless her heart. How is she doing now? I am sorry she is having to manage this at such a young age. I am hoping she is now on some medication to help manage the symptoms? Interesting about the migraines. I've had 4 migraines in my life where my vision goes blurry for 30 minutes (ocular migraines), one of these was just a few weeks ago. Maybe related to what's going on?

@BathsAreBliss thank you so much for sharing your story and symptoms. It's soooo reassuring to hear you are living a normal and active life! Thank you very much. It's a worrying time but hopefully can get to the bottom of it soon.

I've had similar and wad diagnosed with functional neurological disorder which basically means having neurological symptoms but they can't find a cause. I'm pretty sure in my case it is stress and anxiety induced.

I have had MS for over 20 years and I would describe the pins and needles as pins and needles on steroids. They are pretty extreme. Also weird sensations such as feeling something trickling down my legs, when there is nothing there. The feeling of ants crawling up and down my skin when I’ve walked a long way. Lots of weird sensations. As well as all of the other symptoms.

lots of things can cause the symptoms though and lumber punctures (never had one of these) and MRIs are used to diagnose. There are many things including deficiencies that cause the same symptoms and if you’re doctors aren’t worried after seeing your MRI I would be focusing more on what else it could be.

Thank you all for your responses.

@Bluemincat that's very interesting. I have not heard of this before, I will look into it. Thank you. I do suffer from anxiety.