First symptoms of MS. Advice please. - My MSAA Community

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First symptoms of MS. Advice please.


Hello everyone.

I've been a member on this website for a while, but primarily post in the LUPUS and APS forums. I haven't had a diagnosis of Multiple Sclerosis, but I am due to see a neurologist soon after having experiencing muscle twitches. It's more so when I'm relaxed my muscles will start twitching, sometimes they are small and unnoticeable, other times my whole body or a certain limb will jerk. Sometimes i get them in my head and chest, which are the scariest and quite hard t describe the feeling of.

I've also been experiencing (only over the past months) what I can only explain like, a shiver type feeling going up my legs, always starting from the bottom upward. I've been having really bad headaches too. I have one now and I'm so fatigued, I'm finding it hard to stay awake. Every so often my eyes hurt also, so, if i look upward, they feel bruised, which is also a new symptom.

I just wondered what peoples first symptoms were before a diagnosis, from what I've researched online, a lot of people say it was vision problems and whole parts of their body going numb, which I haven't experienced yet. Has anyone had/has similar experiences to mine? Of course, it could all be Lupus, fibro, or APS related. I'm just worried.

Thanks for reading and hope everyone is well.


13 Replies

stacieann1989, I'm sorry you have so much to deal with. New symptoms are always troubling, to say the least.

I hope you get a referral to see a good neurologist soon who can do appropriate testing. MS is sometimes tricky to pin down, especially with its strange symptoms and sometimes negative test results. I do read that if we have one autoimmune disorder, we may be more likely to have another. Your doctor may wish to order MRIs, blood work, muscle/nerve conduction type tests, and perhaps a cerebrospinal fluid analysis. Then he/she may be able to rule out other things.

If you look through all the symptoms people here report, you'll find numerous different and weird symptoms along with the classic ones. I had what may have been a CIS 20-some years ago, but have had symptoms that never seemed to have a basis until last year. My symptoms began with headaches behind the eyes, aching legs, then muscle spasms and pain in my low back and hip, as well as a deep fatigue. When I began having numbness and tingling in my left arm, I saw my doctor who ordered an MRI. The MRI was conclusive, but I had a lumbar puncture, which was negative. My problems with that flare progressed until I had real trouble walking.

I hope that you don't have MS, and that these symptoms fade quickly, but do see a neurologist to get some answers. Keep us posted, too.

Thanks for your response. Sorry to hear of all your troubles also. I'm bed bound today, feel like I've been hit by a bua. I've had sucn terrible fatigue to the point I'm literally falling asleep while I'm walking. I'll keep everyone posted, as soon as I get my appointment. All the best x

Hi Stacy I hope that you can find a good neurologist who can give you an accurate dx, it's hard to come to terms with any type of disorder. I have only been dx for nearly 7 years but I had so much going on in the first 5 of those ms wasn't a reality. Now I have noticed in the last couple of years how much I have deteriorated and realise I have been ignorant to my ms. Now unfortunately I have to concentrate on trying to keep my mobility as much as I can. I hope and pray that your condition is treatable, keep us informed as to how you get on. Blessings Jimeka 🌈 🦋 🙏

stacieann1989 in reply to jimeka

So sorry to hear of your dx and troubles :( i hope that i don't have MS and it's hopefully lupus related. It's all so scary. Bed bound today, my muscles are killing me and I'm so tired. I will keep everyone updated once i see the Neuro. Thanks for your response, and all the best x

make sure they check you vitamin levels


MS symptoms can be vague and overlap with many other conditions and as Greaterexp said, be more likely when you have other autoimmune conditions. By the way what is APS?cantiphospholipid syndrome?

My first symptoms long before being diagnosed was a fatigue induced foot drop. Later trigeminal neuralgia and now nearly 30 yrs later many symptoms seem to be showing up to include body quivers and face spasms.

A rheumatologist tried to convince me I had lupus. It turned out I needed back surgery.

I agree with the others, find a good neurologist. Best wishes!

stacieann1989 in reply to erash

Thanks for your reply and sorry to hear od your troubles, also. APS is Antipholosphipid syndrome, another autoimmune disease that means my blood is 'sticky' and I'm more susceptible to blood clots. I'm more worried about these muscle twitches and the fatuige I'm experiencing is awful. Hopefully I will get some answers when i see the neuro. Thanks again for the reply, take care, all the best x


Hi stacieann1989 Welcome to our MSAA Community ☺. I hate to hear that your having all these problems. And hope you find some answers soon!☺ Although, we would never wish this monster on you! You are always welcome here! You won't find a more compassionate, friendly, nutty, informative but most of all Supportive group 😊.

As greaterexp said MS is very tricky to pin down as it's different for everyone. The DX can take years or months. Here is some information from MSAA to maybe help you with some of your questions.

And please come back and ask here!😊

Jes 🌠

~Helpful Hint~ If you put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

Thanks for the reply and the link. I'll deffo take a look. I get about how long diagnosis can take. Took two years for my diagnosis of aps and a further year for lupus and another year for endometriosis, so I'm nit expecting miracles on my firdt visit to neuro! Thanks again for the advice. All the best x

My first symptoms were fatigue, numbness in the left arm and tremors in my hands.

Thanks for your response x

Hi stacieann1989. It sounds like you've already been diagnosed with Lupus. What does your rheumatologist say about your symptoms? I know MS and Lupus have overlapping symptoms and one can have one disease or the other, and be misdiagnosed at times. But greaterexp was correct in saying that it isn't uncommon for a person with one autoimmune disease to develop more. My first MS symptoms started as a buzzing vibration down my back and onto my face. Sometimes a burning sensation followed. I also started falling due to a 'drunk headiness' and foot drop. I pray your doctor can help you and treat you accordingly. 💕

stacieann1989 in reply to Tutu

Hiya. Thanks for your response. I do get a similar feeling, almosr like I've a few glasses of wine...but it comes.and goes. And i always go dizzy is i stand up. Yes, jave a diagnosis of lupis. Rehumy told me aps and lupus can sometimes mimic tje symptoms of ms so fingers crosses. Honestly, every time i have an appointment with rheumatologist its always a new person. Lateast guy just seemed to want me to hurry up and get out of his office. They didn't tell me much about anything. Jusy gave me leaflets and sent me on my way. I also get this weird pin prick feeling, sometimes hot or cold, like someone's pricked me wkth a cold or hot needle. Happens mostly on my head and feet. Hopefully I'll get some answers soon. Thanks again for your reply and i hope you're well x

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