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Maybe, Maybe Not? A Waiting Game.

Hi everyone. I am a proud “47” year old woman. Sometime days I feel 21, other days 80.

Numbness and vertigo

2008: Years after having my son, I developed cystic acne. Nothing seemed to help but a birth control pill I was prescribed. I had no need for this besides the acne as my husband was “snipped.” I suffered what I would say minor side effects (weight gain, moodiness, no sexual desire), but my skin looked amazing!

About 6 months after using the birth control pill, I experienced numbness on my left side, head to toe. I went to my family doctor which immediately took me off of the pills. The side effects diminished days after.

Weeks later I developed vertigo. Coming and going sporadically throughout the month.

A few months later I would have tingling sensations in my hands and feet.

My doctor was concerned

I had mentioned all these issues to my doctor at that time and she was concerned and mentioned maybe for me to be tested for MS.

I heard nothing from the doctor weeks later and decided to call the office. My doctor had left her practice to look after her ill parents abroad.

Back to the drawing board! Time to find a new doctor.

2012: I found a great doctor!

I would say I had no real symptoms up until a year or so seeing her. It started with bouts of vertigo that would last for a couple of days. A couple of times I actually fell over and hit my head. I’ve had many days of horrible fatigue. I forgot to mention, I don’t go to see the doctor for much. It has to be really troublesome for me to do so.

MRI test

With episodes of numbness in my hands and feet, vertigo, a groin spasm that would make my leg give out and extreme pain in my elbows and forearms, and being diagnosed with extreme vitamin D deficiency, my doctor got me in for an MRI on my brain.

Results showed NO lesions.

Years passed with some of the same symptoms appearing and with extras added to the mix. One being my vision. I chalk it up to getting older but not sure about the blurred and double vision sometimes.

Extreme pain and numbness

July 2018: I went to bed and was woken with extreme pain. It felt like someone with large hands had wrapped them around my body and was squeezing my ribs. This repeated itself for 5 nights, lasting for 4 hours easing off the last 2.

October 2018: Woke up one morning. My left side was numb. Numb like when the dentist freezes you, but the freezing is almost out, but not. My entire face, tongue, neck, arm, hand, torso, leg, and foot. I waited for 5 days to see the doctor.

I was not wanting to be a burden on the doctor when it seemed like anytime I had any sort of symptoms, it came up as nothing.

I finally went to the doctor

I was getting annoyed with the numbness and phoned to get an appointment. She couldn’t fit me in for 2 weeks.

So I called my husband’s doctor and he was able to see me the next day.

Doctors Appointment: I explained my symptoms, went over my history and he immediately ordered an MRI. I was scheduled in 2 weeks.

During that 2 week period, the numbness eased but new symptoms appeared.

The large squeezing hands around my ribs came back but only lasted 2 nights for an hour or so. Then a brand new symptom that I had never experienced – burning feet! Not hot to the touch, but unbearable.

One other thing that I never really thought much about that I’ve had off and on over the years and has worsened the past few months was not being able to take the heat.

My showers and baths – I love scorching hot but can no longer handle. I have almost passed out at times.

Do no lesions mean no MS?

MRI Results: Once again, NO Lesions! MRI was only on my brain.

My doctor said he’s not convinced that this is not MS. He is now sending me to a neurologist that specializes in MS.

I’m still waiting for a call with an appointment that they said would take 6 to 9 months to get. I’m not showing any lesions so I understand I am not a urgent case.

I’m now just waiting patiently. Trying not to annoy my family and friends with the symptoms I am having by keeping them to myself, but it’s frustrating, and hard for many to understand.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • erre
    2 months ago

    Hi, what was the result of your Dr’s visit?

  • erre
    2 months ago

    Hi Cleo
    I see your response now. I’m also having similar symptoms. In July, The specialist also only did MR scan of brain and not of spine and said my symptoms could be stress. The past two weeks symptoms got worse. I started having floats on my left eye, numbness in my left side of body, I can’t see without glasses anymore, battle to concentrate, have burning pain in my spine between shoulder blades, increased tinnitus and crystal sound, stiff neck, muscle twitches, rough and dry tongue sensation in morning when I woke up, increased sugar levels, burning hands and feet, random muscle weakness and stiffness, just want to sleep. Could this all be stress?

  • Cleo1920 author
    4 months ago

    So I finally had my appointment with my neurologist. She diagnosed me with FND Functional Neurological Disorder. I’m a bit taken back with this diagnosis as the only tests that were preformed on me were MRI of the brain (which came up negative), a physical assessment, and a history of symptoms. Should there have not been other tests done on myself to rule other things out?
    Opinions please.

  • Densz
    7 months ago

    I too have been on the waiting game is it or isn’t it. I was slowly progressing and
    after 10 years of symptoms, going paralyzed on right side ( lasted 30 minutes), muscle spasms and pain, numbness, vision deficits, extreme fatigue,
    (all I wanted to do was sleep), brain mri’s showed lesions and black hole, I have finally been diagnosed. I have also dealt with thyroid cancer. I will be starting generic Copaxone. I have found that keeping a positive attitude helps. I had a couple neurologists that did not help, and finally found one who tried to figure it out. It is not always a easy diagnosis. I think I was finally diagnosed because I went through a very stressful situation with caring for a family member and had a lot more trouble with the neuros tests. I am 55 years old, but sometimes feel eighty. I am hopeful about treatment, but nervous. Keep persisting about a diagnosis, the symptoms are real and you are not crazy. I kept asking my neuro is it ms or not. Find a dr who is on your side because you will be dealing with them closely.

  • aeview
    8 months ago

    Tell him check your spine. Sometimes MS wont present in the brain but will in the spine. Im trying to figure out myself if I have MS or not. I have the symptoms and 7 yrs ago a clinic that did a brain scan found a small lesion. Over the last few months the symptoms have gotten rapidly worse. Gabapentin and a couple other meds help with the nerve pain and tremors. It is definitely auto so I hope I get some answers soon.

  • charlynn
    10 months ago

    Hi I know it’s frustrating. You are feeling so much and not getting a solid answer. I get many of the symptoms you experience. The vertigo and the hug would drive me crazy. After years of this I decided I just have to accept it.

    I find it interesting you had an MRI of the brain only. I wonder why the spine was not done. I have lessons on the brain, neck and spine.

    I will recommend be your own advocate. Push for an MS specialist.

  • Cleo1920 author
    9 months ago

    Hi Charlynn,

    I have no idea why only my brain had a MRI.Years prior there were no lesions found on my brain either. When I finally get an appointment to see the MS neurologist I will request a full body MRI. Do you suggest any other tests you would think would be helpful?
    I still have many symptoms off and on with a few that have not left. I can not remember them all. I have numbness in my right big toe, blurry vision, fatigue, numb nose,eye, amd lip that have not gone away, memory issues. have had IBS for years, just had a procedure for incontinence, hot feet come and go. Heat has been an issue, baths and showers.
    I do not want MS, I just want answers. I don’t think all this is normal.
    It’s so nice to have people to connect with.

  • Kim Dolce moderator
    10 months ago

    cleo1920, the absence of lesions in your MRIs could indicate there are lesions so small that the machine can’t detect them. It is so frustrating to keep hitting brick walls on a journey to diagnosis. You’re doing all the right things by not giving up and continuing to pursue testing. I hope the appointment with the MS specialist provides you with some answers and relief. Please keep us updated, we care! –Kim, moderator

  • Cleo1920 author
    10 months ago

    Thanks Kim
    I’m not quite sure which MRI machine was used during my test. I have read that there are different MRI machines that pick up very small lesions compared to others.
    When I do see the specialist my doctor thinks she might suggest a MRI on my spine and a puncture.
    Hoping for the appointment and some answers soon, whatever they might be as I keep having more and more issues.
    Patience: )

  • Harry
    10 months ago

    95% people show legions on the brain. There is 5% of people that have them showing only on the spine.

  • Donna Steigleder moderator
    10 months ago

    @Cleo1920 I don’t know if you found this article yet on our website, but if not, I think you will find it interesting. The article explains how MS is usually diagnosed and clarifies that it does not always show up on a brain MRI. Sometimes, you see it on a spine MRI, or it’s not there at all due to the lack of sensitivity of the MRI. That is why an MRI alone is not the only factor used to make a diagnosis. You might consider sharing this with your doctor and discussing additional options.

  • Cleo1920 author
    10 months ago

    Hi Donna
    Thank you for the link to the article. I will read it for sure and see what the specialist says when I get into see her.
    Much appreciated.

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