Progression Of FND

[BiggieSmals]

I’m curious how FND has progressed for others. Did the many different symptoms start within a short time span? Or did it progress slowly over a number of months?

[Jofisher]

I had an injection in my neck three days later I experienced a stroke like effect and from that everything else went pair shaped.

[Juno13]

I progressed in a downwards spiral for five years to the point I was wheelchair bound and having at least 50 seizures a week when one day I was practicing my walking along the back of the couch and decided to take a few steps beyond the couch. Those few steps were the start of a spontaneous recovery so never give up hope of recovery if it can happen to me it can happen to anyone. I will also add I wasn’t one of those positivity nuts I had accepted my disability was for life.

[HenriettaPoultryfoot]

Hello.

I started with mild vision problems in early Spring 2020. Thought I just needed an eye exam. In July of same year, the fatigue started. Between July and October 2020, several symptoms came on board. Over the next year, more symptoms emerged. Now visual problems, motor & balance challenges, constant head pain,, whole body pain, bowel disturbances, and cognition issues are my daily FND.

No new symptoms for months.

[BiggieSmals in reply to HenriettaPoultryfoot]

What kind of vision problems were you having?

[HenriettaPoultryfoot in reply to BiggieSmals]

In both eyes, I have developed Dry Eye Syndrome and Ocular Rosacea. I am extremely photosensitive. I have Essential Blepharospasm and eye pain (especially the right eye). I have the feeling of my right eye being pulled of sucked into my head. Very painful. The bones around my right eye hurt so badly sometimes they feel broken. They’re not. I have been to five Opthomologists. I use Restasis eye drops. Use moisturizing dry eye OTC drops. I undergo a procedure to have thickened tears squeezed out of my tear ducts every three months. The tear ducts clog up and don’t properly excrete tears onto my eye balls. I don’t see well. It is the interpretation that is the issue. My acuity is just typical adjustment for glasses.

[WesleyBuck]

Mine started with tremor in my right leg intermittently. Over several weeks I had right hand/arm tremor and intermittent fatigue. Then my gait was affected and I developed neck pain. Eventually diagnosed with spinal stenosis resulting in c5/6 fusion. I still have mild to moderate compression in other sections of the cervical spine as well. After surgery I was 95% back to normal, but continued to have right leg tremor. Since then, about every two years my symptoms return along with added symptoms such as brain fog, night sweats, insomnia, vivid dreams, joint pain, tongue/jaw/head tremor, muscle spasms all over, IBS-D, etc, etc. My last episode came on instantly after re-doing my garage ceiling. That was last august and the symptoms haven’t let up since. Perhaps the stenosis or the surgery is what triggered FND for me along with a lifetime of anxiety/depression? So in summary, for me, my symptoms have worsened and become more frequent and numerous over time.

[Obrien8175]

FND is a journey, I’ve had new symptoms come on, sometimes my symptoms quiet down for a few weeks, then come back stronger, it’s a journey. I know my triggers and they are sometimes hard to avoid, and the “not knowing” of what may come next is challenging, but this is a part of who I am and there are hard days to embrace that, but on days that I can my symptoms effect me less.

[MONIREN]

Slow for me. Started crab walking, veering to the left, 2017, then slow speech a few months later, then full body jerking ,brain fog, now doing the John Wayne walk. Losing fine motor skills, difficult to control my hands, sometimes wake up with left hand balled up, very painful to straighten. Most of my symptoms are on the left, numbness. But still able to function, just getting harder. Thankful for every day, still fighting. Take care. Moni

[sgaetna2013]

FMD has had an odd trajectory for me. Symptoms (severe gait disorder) came on very suddenly in May 2020. Gait was so impaired that I did not feel safe leaving my house unaccompanied.

An equally sudden "remission" came on in October and lasted through December 2020. Once again I became acutely symptomatic in Jan. 2021. A second remission started in June and lasted 3 months.

Symptoms returned in Sept. 2021, but this time, in addition to the severe gait impairment, I had a severe balance disorder and suffered frequent falls.

Another remission seems to have started 3 weeks ago: no balance problems, no falls, gait back to 75% of normal.

My physical therapist tells me she has never seen anything like the course of my condition. Treatment options (here in the U.S.) seem almost non-existent. I have the impression that U.K. is far ahead in understanding and treatment of FMD.

[Brokendeer in reply to sgaetna2013]

Hi just a thought, but you have been tested and assessed for relapsing/remitting Multiple Sclerosis right?

Because the pattern and symptoms you describe seem textbook for MS to me?

I myself was monitored and had scans for MS for 3 years before they decided "probably not MS" and then being diagnosed with Motor FND.

Recommend you look up the Multiple Sclerosis Website and see if anything else rings true for you mssociety.org.uk or mymsaa.org

Look for the calm in the Storm!

[DarkBlackberry]

I did not know that I had FND for years. I was diagnosed with a vocal tic when I was 18 years old and that is coming up on 18 years this November or December. I wrote a whole paper about what I have gone through during that time. I have had good years and bad years, now it is just focusing on one day at a time. Things have been adventurous, so up and down.

The spams causes my body to spasm in the neck, jaw and back.

I hope things go well for you.