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Unsure if these are symptoms of something valid or just of being a person

Hello! 32F

I hope everyone is having a good evening! I appreciate anyone who reads this and has any advice to share.

I have not been diagnosed with MS. I've had several x-rays and blood work to address the symptoms listed below.

Aside from slightly elevated lymphocytes, nothing was amiss. I did manage to get an appointment for a neurologist for what I thought was an MRI, but after some reflex tests, was told there wasn't enough for an MRI.

I really wanted an MRI for the constant headaches and the spine pain, not because I suspected MS. However, a colleague with MS from a few years ago had recommended I look into it.

I'm definitely not looking or expecting anyone to diagnose me. I'm mostly looking for I suppose, confirmation that these symptoms are enough to continue to advocate for myself to get an MRI or seek further help. Or if anyone here can relate to having these symptoms during the journey to a diagnosis.

I've been gaslighting myself out of further help because I'm not sure if these are just symptoms of being a person or actually just ADHD lol

I've had the following symptoms:

16yrs: I was in track and field in high school. I was in the middle of a sprint, when my left leg suddenly felt like it lost all power. I couldn't put weight on the leg. Anytime I did, I felt extreme pain in my left hip. I assumed it was a pinched nerve.

22yrs: I felt like a rubber band was around my upper body, making it difficult to raise my arms.

Since then, I've had the following symptoms, recurring for weeks or months at a time, then lessening:

Feeling hungover in the morning (I've been an extremely light drinker the past couple of years, and now have maybe 1 or 2 drinks a year.)

Feeling drunk in the morning

Frequent sore/swollen throat, not raw or hot but feels constricted or like I've swallowed a piece or ice or a tortilla chip whole, leaving my throat feeling bruised

My neck lymph nodes, jaw and down my neck will feel achey or tender

Back of my tongue and the edges around the back of my tongue will feel like I've bitten them, even though I haven't

Brain fog

Extremely tired after eating

Night sweats

Overheating during the day, even if I'm wearing shorts, tee shirt and socks

Near constant fatigue and feeling like I'm vibrating when I'm especially tired. At one point, I thought I might have had narcolepsy. I couldn't stay awake for anything. 1:00 pm was usually my crash point. No matter how much sleep I get, I'm never not tired.

Varying headaches that last days, sometimes a week and aren't relieved by pain relievers or caffeine:
Tight band around the back of my head
Feeling like the front of my skull has been shattered with a hammer
Sharp stabbing behind my eyes
Feeling like an anvil has been dropped on my head
Feverish

Pain in left shin, spasm and pain that lasted 10 seconds, would go away, and then come back

Right ball of foot sometimes buzzes, like my phone is on my foot and is vibrating

Sharp stabs between my rib cage

Painful spasm in my lower back that causes me to seize up

Constant massive knots in upper back

Burning on shoulder blades and feeling like my thoracic muscles are ripping and pulling away from my spine

Very slight hand tremors when I'm tired, just enough to make intricate tasks annoying

Soreness running from my right ring finger up my arm to my neck

Heartbeat will speed up randomly

My neck and heart will feel tight suddenly, making it painful to breathe.

Difficulty speaking at the end of the day, trouble getting words out, forgetting the words for things. Ex. "I loaded the dish washer"turns into "I lo lo lo loaded the cleaner for the plates"

Walking can be exhausting. Either leg, but usually my left leg, will feel heavy and not as supportive when walking. Sometimes, it's five minutes into a walk. Sometimes, it's 15 minutes. And my ankles and feet feel sore and tender.

Especially at night, the vision in one of my eyes will look dim or washed out. Like the color is noticeable different looking at an item in one eye versus the other. Or there's a hazy blind spot in one eye.

Frequent spine and neck pain. My spine and neck will be painful and stiff, with one side of neck feeling noticeably swollen. This time last year, I woke up at 5am to use the bathroom. I could barely get out of bed, I was in so much pain. My spine and my neck didn't feel like they were connected. I got back in bed and as soon as a laid down, the entire right side of my body felt hot and swollen, the hearing in my right ear went fuzzy but I could hear a ringing in my ear.

I went to the emergency room and had a spine x-ray but everything checked out. The ER doctor said it was probably stress and gave me a prescription for extra strength tylenol? or advil? Something like that, I'm just unsure.

This still happens every 2 months I would say.

I was diagnosed with inattentive ADHD a year ago and since last October, I've been on Vyvanse for the ADHD and Paroxetine for anxiety.

The Vyvanse definitely gave me a bump in energy at first but has worn off a bit. I still feel the fatigue on the Vyvanse but it's much worse when I don't take it.

My psychiatrist has prescribed me Gabapentin for the pain I described. I'm picking it up this weekend.

Any advice at all is extremely appreciated.

Have a good night!

  1. Hi . Welcome to the community! I am glad you reached out here. Your symptoms might indicate MS or maybe they are caused by something entirely different, but there is definitely something going on and you need and deserve answers. Has anyone at least done a CAT scan of your brain? Unfortunately, it is all too common that doctors will brush neurological symptoms off as psychological or psychiatric when they are presented with vague symptoms and difficult cases. You need doctors who are communicative, compassionate, knowledgeable and willing to think outside the box. If you are not getting that from your primary care doctor or your neurologist, it's time to advocate for yourself and find someone else. Here is an list of health conditions that mimic MS and should also be ruled out: https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions. Here is an article from one of our advocates about her own 5-year journey to diagnosis: https://multiplesclerosis.net/living-with-ms/what-is-it-like-to-not-be-diagnosed. I thought it might help to know you are not alone. Please keep fighting for yourself and fighting for answers. You deserve to be heard, to be properly treated and to live your life as fully as possible. Keep us posted if you don't might doing so. I will be thinking of you. - Lori (Team Member)

    1. Hi Lori is right about you not be alone and I been through the same drill with doctors telling me it’s psychological or psychogenic with my symptoms all I had is a brain MRI EEG and EMG came back normal it all started with my gait back in 2008 Did you get an MRI of your brain or Cervical spine and spinal tap that should confirm MS

      1. oh btw not only that That doctor’s thought it was psychological one doctor on my end thought it was Functional Neurological Disorder without doing a spinal tap and cervical spine MRI


        https://www.mayoclinic.org/diseases-conditions/conversion-disorder/symptoms-causes/syc-20355197


        1. Hi . Thanks for chiming in and offering support. If you don't mind me asking, what did it take to finally get a thorough evaluation and a diagnosis? Wishing you the best. - Lori (Team Member)

      2. Hi Lori thank you anytime it was my reflexes that were elevated and brisk with some intermittent esotropia in my left eye and some Nystagmus with left lateral gaze. As well as being off balance I’m subject to falls and lost my balance fell down the stairs last year in the fall The neurologist I have now is very good caring and he listens and would highly recommend him will keep you posted what my cervical spine MRI results if anything comes up It’s been a long process of finding answers since 2008 when it all started of with my balance. Functional Neurological Disorder is always a possibility as well

        1. I am glad you found such an awesome doctor, . That can make all the difference in the world. I hope you figure out for sure what is going on and how best to treat it. Thinking of you and sending lots of positive vibes your way. - Lori (Team Member)

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