MS Symptoms for years and new dr is leaning towards it- What to expect??? Anyone else???

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Hello everyone, my name is Faith. Please bear with me as this is going to be a long winded post. I am new to this community and looking for support and similar experiences from others who have had similar journeys as myself.

To make a long story as short as possible I am going to summarize a few things here:

I was born almost 4 months premature. I have always had many issues in life.

I had a pool diving accident in 2010 when my neck snapped and caused two herniated discs c6-c7 and spinal cord compression which showed up on an MRI in 2012.

My symptoms over the years have gotten progressively worse and I have gone through a myriad of doctors and diagnoses. Here is my current list of diagnosed conditions:


Metabolic x disease


marked infertility (now resolved after gastric sleeve surgery and I have a 4 month old son)


Anxiety disorder


Herniated discs c6-c7

Spinal cord compression- cervical

Cervical radiculopathy

Sacroiliac joint dysfunction

Insulin resistance



Kyphoscoliosis (mild)

iron deficiency anemia

sleep apnea

chronic migraine

Here is my list of symptoms :

Daily flare ups in my entire body some days are much worse then others but I generally wake up not feeling rested and it is a very difficult effort just to get out of bed and barely lift a finger. I have to sit in the shower. I cannot hold my son for very long and usually have to sit reclined with him. On really bad flare days I have extreme burning pain and shocks that shoot down my spine, tight rib cage, burning throughout my hands and fingers, flu like feeling behind my eyes, short term memory loss, spacing out seizures (catatonic during severe episodes usually in a high stress encounter such as an argument)

Severe heat intolerance

Severe cold intolerance

Extreme weakness when exposed to sunlight, like I am walking through molasses or quicksand with every step.

Weakness that comes on like a hurricane and does not relent for hours.

Tremors in legs and hands when weakness is piqued

minor lift in energy after eating only to crash and be just as fatigued as before after

chronic migraine

blurred vision before migraines or without migraine present (new prescription glasses but this still happens frequently)

severe dizziness when turning head sometimes (new in last year)

gait disturbance (thought it was due to hip issues, scoliosis but it may not be)

severe clumsiness (worse in last couple of years, ie - spilling drinks ALL the time)

severe fatigue that never goes away

slurred speech during bad flare ups

burning and severe pain in neck and down back , pain areas seem to be my entire body but left side is more effected then my right side right now- my left wrist feels inflamed and burning, my left hand is burning and aching, my left shoulder hurts, my left leg is pulsing, my ankle area is pulsing as well and a wave like feeling is going into my foot even as we speak.

Mind fog often happens

ear ringing sometimes happens

I had an MRI in 2012 but they were not looking for lesions as nobody suspected MS before as I had very ignorant doctors that just wanted to mask my symptoms with pain pills which I eventually stopped taking and refused to take.

I am getting a new MRI on my neck to see if my spinal stenosis has worsened as my symptoms and flare ups have gotten progressively worse and worse especially in the last couple of years and have flared to an all time high after my pregnancy and giving birth in january.

My new doctor is amazing and immediately suspected MS. He tested me for AS to make sure I didn't have ankylosing spondylitis. He wants to check for lesions in my neck. I have medicaid so it won't cover the entire spine and brain MRI so he wants to do neck for now then do a full neurological assessment and get me in with a new neurologist.

I also know MS can "hide" on MRI's. I am looking to see if anyone has had a similar story as me. Similar symptoms for many years, taking forever to get diagnosed, having an MRI with no lesions then having one with lesions later on or even getting a diagnosis without finding lesions.

Looking for support during this difficult journey...I'm only 32.

Thanks everyone,


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1 Reply

  • Edited

    Hey sorry to hear what you're going through! 😔 I was recently diagnosed with primary progressive MS..First I had inflammation in the back of my eyes & nobody thought anything of it I just ended up with eye drops, then I started getting pins & Needle feeling on my hands & toes, ended up I went to physiotherapy just for them to say to do neck exercises..It eventually got better, & after years I decided to go to the gym with my partner to try lose a little bit of weight, then a few months later it kicked in I wasn't walking properly..It was like lose of balance, my legs felt so heavy I kept tripping up..My eyesight was getting blurry I couldn't take hot baths, because I can't walk after it, my partner had to help me...My lower back now aches, and my walking, pins & Needles getting worse..The neurologist sent me for a Brain & Spinal MRI scan showing signs of inflammation in my spine & Brain & now I have had all the tests I'll be getting an infusion to slow the process down..I hope this helps, and you get all the help you need.

    Kind regards

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