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New DR is leaning towards MS after years of symptoms...what do you think?

I am browsing multiple forums to find people going through similar symptoms as me and looking for support we can give to one another. I have had these symptoms for many years, I have cervical spinal cord compression since 2010. I was born almost 4 months premature and have had lifelong issues especially when it comes to my brain not processing signals properly. That is why I got the fibromyalgia diagnosis in my early 20's but I had a lot of ignorant doctors that refused to test me for things like MS because I was so young. Even when they found spinal cord compression in my neck they didn't even say anything about it. I had to look at my MRI report in 2012 to see that I had herniated discs in two areas and the spinal cord compression. I didn't know I had kyphoscoliosis until my epidural for my first pregnancy January of this year.

My long list of symptoms I wrote in my first post in the MS forum on here. I have flare ups daily and they have gotten progressively worse. I feel like I am growing weaker and fading away. It is an extreme effort just to get out of bed and just to breathe. I constantly feel like I have the flu mixed with the nerve pain, the burning in my neck, the shooting pains down my spine, the dizziness, the blurry vision, the list goes on.

Luckily I found a brand new doctor a few weeks ago to finally try to solve my case. He said my case is very complicated and said during my follow up a few days ago that he is leaning towards MS. He said with my symptoms and his strength test on me and my history that it is either my spinal cord compression is to the point of needing a neurosurgeon or I have MS.

I am awaiting the MRI order as I have medicaid and it takes a bit to get it approved but they are only able to get the cervical spine approved due to my insurance. However, I am working from home and will have new insurance starting in July so maybe I can get more ordered then. Based on those findings, he wants me to get in with a new neurologist and look deeper into my body (doing neurological testing and further evaluations) probably to confirm an MS diagnosis.

I have alot of the symptoms and have had them for many years. He thinks the fibromyalgia was diagnosed by doctors who didn't want to take the time to properly figure out what was really going on. I have a 4 month old son and a loving husband, I'm only 32... I hope that this isn't MS but honestly I know in my heart that it is. I am trying to think positive thoughts and hope lesions don't show up on my cervical MRI. I have heard you can get an MS diagnosis without lesions because they won't show up on MRI if it's not active but with my flare ups as bad as they are right now, I am sure they would show up...

Anyway let me know your thoughts and any resources that you think may help me. I appreciate you guys.

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:

Hypothyroidism

Metabolic x disease

PCOS

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

MDD

Anxiety disorder

PTSD

Herniated discs c6-c7

Spinal cord compression- cervical

Cervical radiculopathy

Sacroiliac joint dysfunction

Insulin resistance

Fibromyalgia

Asthma

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,

Faith
Me on a good day

  1. Hi Faith! First off, WHEW! That's a lot to be dealing with at the age of 32! I am glad you have kept pushing for answer over the years. However, I am so sorry it's taken so long to start (hopefully) finding a full and proper diagnosis. I can't offer any medical advice/diagnosis, for your safety, but it does sound like a number of your symptoms overlap with MS symptoms. An MRI is only one of the tools used to diagnose MS. It is an important tool but occasionally, a physician can diagnose MS without an MRI. Some individuals can't have MRIs so physicians will use other tests to diagnose MS. Here's some information on the diagnostic tools. Of particular interest is the spinal tap (also known as the lumbar puncture) -- https://multiplesclerosis.net/diagnosis/tools-your-doctor-will-use-to-make-a-diagnosis. Here's more specific information on the lumbar puncture -- https://multiplesclerosis.net/diagnosis/lumbar-puncture. It is rare that a neurologist will diagnose MS with no lesion activity present in MRIs, but I won't say that it never happens. There are always those cases that fall outside the "norm", and you may be one of those cases. I do hope you get some helpful input from other community members that may have some similar experiences to yours. Despite your health issues, I hope you are able to enjoy your time with your new little baby boy. You definitely worked HARD to bring him into this world ! I hope you get a clear diagnosis following your MRI and that your physician has some possible treatment options for you to consider. AND, lastly, I hope that whichever treatment course you choose, that it works very well for you, with minimal side effects! Thank you for taking the time to share part of your story with the community. Best, Erin, MultipleSclerosis.net Team Member.

    1. Faith! You have been through so much, and at such a young age. Your experiences are sadly familiar to many of us, and yet unique to you on your journey to a diagnosis and treatment. Erin has shared excellent insights and advice, I couldn't have said it better. I hope your new neurologist will provide some answers and relief very soon! You have waited and suffered for a long time. Thank you so much for writing about yourself here. We are SO moved that you shared your story with us 😀 Please, please update us when you know more. And please do consider writing more about your journey in our Stories section. Looking forward to hearing from you again, dear Faith 😀 --Kim, moderator

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