Last reply 1 year ago
Not yet diagnosed, but please help!

I don’t really know where else to post this, but I figured I could get some feedback from people who have actually experienced similar neurological symptoms.
I have not been diagnosed with MS. I have been having some strange issues seemingly related to the CNS for about three years. I’ve had zero injuries, and recently found out that MS runs in my family on both sides.
My symptoms began three years ago. I took a nap, and woke up with an excruciating pain shooting up my spine to the back of my head. I went to the emergency room. They did an x-ray of my spine, and found nothing. The spinal pain began to subside a bit, but then pain spread to literally every part of my body. It felt like pressure/numbness/tingling/electricity. I started having constant muscle spasms and weakness accompanied by strange rashes and flu like symptoms. I experienced visual disturbances and general confusion/memory problems. I ended up in a wheelchair for three months. I only saw orthopedic specialists. Every doctor assumed it was lupus or rheumatoid arthritis. All vitamin levels and other tests were normal. After those three months, the symptoms gradually faded (mostly).
Three years later, I am now having severe muscle spasms again. My muscles feel extremely weak, causing me to drop things regularly. My arms are pretty much just spastic, wet noodles at this point. My coordination in general is completely off. Today I experienced that same​ squeezing, electricity-like pain in all of my limbs wherever the muscles had been spasming. I get a weird squeezing pain around my upper abdomen as well. There’s a vibrating sensation in my fingers. And i frequently have trouble walking. Yesterday I had a numbness in part of my face and I felt a feeling that was like spiders running around on my scalp. I started to get kinda dizzy and suddenly vomited… Then I went to work… At a restaurant… Full of glass dishes. Lol. Yay! My fumbling arms and legs aren’t doing well in that environment.
If anyone could tell me if any of this is reminiscent of their symptoms, or symptoms of MS in general, it would be greatly appreciated. Thank you.

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1 year ago

Hi @soambo and welcome.

I can relate to some of your symptoms, but not all. And, this is where the problem lies. The body, especially the CNS, is very complicated and can be affected by various conditions that give similar-type symptoms.

The fact that you have MS on both sides of the family would increase the likelihood of you getting an auto-immune condition.

It seems that you need to discuss a referral to a Neurologist, an MS specialist, with your Doctor.

Make a short concise list of your symptoms, with a timeline, so this is available to your Doctor and the Neuro. And, make sure you mention the family history.

Good luck in your quest for answers.

Hi @soambo,

Sorry to hear about all your symptoms. It is definetly a hard situation but have confidence you can manage this and hopefully you can get what you need. Did you ever have an MRI or a lumbar puncture for tests? What type of insurance do you have? My concern is that you might not have had all the tests that are needed. I would push to make sure you get those done because that data may really help get you answers.

1 year ago

@stumbler @californiadreamin
Thank you both for your feedback. I have not yet had the necessary tests done, because my original symptoms were assumed by the doctors I was seeing to be orthopedic or nerve relatedly only. They never once suggested anything neurological. My friend who is a doctor is the one who suggested I see a neurologist. Now I’m going through the process of getting a referral and all that fun stuff. I have Humana insurance.

based on your symptoms and family history I think those tests are something you should look into quickly. There are some really good options for ms today so if thats what you end up having its likely your outcome can be even better then others in your family.

1 year ago

hi I am classed as CIS at the moment waiting to go back to see my neurologist , I would definetly look into having the tests done , I first started with chronic headaches and double vision, with dizzy spells which after time went but had a mri and showed white matter changes , my doctor only wanted to do lumbar puncture to rule out other stuff but instead showed inflammation and since then have had muscle spasms , pins and needles ect. I haven’t dropped anything (yet) but most of my symptoms seem to be in my left leg at the moment , I have had the electricity feeling in my leg which does feel strange but I would recommend asking your doctor to do some of these tests to just check , if you ever want to ask any questions feel free to message me , take care x

1 year ago

hi dear, i have MS since 2008 but had my first symptom in 2006. My first symptom and the next four were with my eyes (foggy vision), next was index finger on the right arm which uncontrolably started stretching out this made my crazy, because i couldnt write. other symptoms were also connected with my coordination, as i wanted to sleep i felt like everything is shaking and if i didnt get up to a sitting position i vomited. And than the last symptoms were or still are problems with my legs. It feels like after 300 metres i cant bend them normally and i turn into a puppet. I sounds funny but it isnt. So these were my symptoms. However every person has his or her own symptoms, as you surely know there are not two people with MS who would suffer from the same symptoms.
I wish you all the luck to feel better 🙂

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