Living nightmare

Hi! I'm in the midst of getting diagnosed. I had a horrible bout where I was unable to walk without tremoring and doing scissor gait, which was believed from extending my neck and lower back. I was hospitalized for few days and then transferred to inpatient rehab where I had to learn to walk again! I'm currently in outpatient physical therapy and still have episodes especially when I stretch and do strengthening exercises. I've had symptoms for 10+years which seem to progressively worsen. I was treated for dystonia with no effect from Botox. I waiting for proper diagnosis to get on right path of treatment, so I can function and care for my family.

5 Replies

  • Hey, sorry to hear the trouble you are going through. You've done great so far with learning to walk again from the in patient rehab.

    Keep focus on what you want to do and achieve. It's a process but you will learn to live with things.

    I've only had it for 2 years but to see you with 10 years of issues and only just get help , my heart goes out to you.

    Keep stronge, stay focussed and don't give up!

    God bless


  • This condition is so difficult to deal with not only for you but for those around you. I can read between the lines of your post and like myself and many others, the common thread of felling guilty at being ill. If FND had the same standing in society as say Parkinsons etc then maybe just maybe we could accept our position easier. YOU ARE NOT GUILTY BY BEING UNWELL.

    All any of us can do is to make the most of what we have, sometimes the bad out-ways the good but with practice we can learn to focus more on the things that make us smile. Take one step at a time, sometimes that can be a literal statement, talk to and tell others about FND and the realities of such a debilitating condition. I am sure you are aware of the Neuro Symptoms website. Ask your friends and relatives to check it out.

    From a personal point of view I find periods of deep depression when I struggle to manage to get through the day. These are often reflected to when my mobility, cognative powers or most common "FATIGUE" is worse.

    Take care and best wishes

  • Thank you! Yes, I do have a lot of guilt. I have 3 young children(5 and under) that need care. My parents help out immensely and I still get fatigued so easily where it's hard to manage their care. My husband is supportive, but nobody can understand the complete disconnect from mind and body that I experience. I'm always on the go and then my body shuts down. What treatment works for you????

  • I have found that anti-seiaure drugs work best for me. I take gabapentin and primidone and backlofen to move my legs. With out the backlofen I cannot walk at all and the pain in excruciating. Prayerfully your Dr.s wil be willing to try one or two of them. God Bless, Cathy

  • Sherman,

    Consider taking Co-Q 10 liquid form (pharmaceutical grade, high fat and water soluble) that is sold at Costco in a black and gold bottle. Consider taking it morning, noon, and night every day, for one month and then let me know how you feel. Read the online reviews yourself. I take it and wish I had taken it years ago. Please let me know how you do. Thanks.


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