covid 19 and Funcational Gait Disorder

[lorettapalmer]

Hi All

I’ve had Funcational Gait disorder for 12 long years now, so cannot walk very far and rely on my mobility scooter and walking stick to get around. Last Sunday I came down with covid and it seems to have attacked my legs so I’m almost unable to stand let alone walk a few steps. Has anyone else had this? Dare go to the gp as he knows nothing about FND and struggling to work out why it’s hit my legs so bad. Many thanks in advance

[Lady4]

Hi Loretta

Sorry to hear your having such a hard time. I think that with flu like illnesses people with FND suffer more esp if they happen to have low immunity too. My son definately needs longer than most to get over colds/flus.

The medical profession are very cautious about linking Covid injections with FND and long Covid but don't put off seeing your Dr if your symptoms last longer than usual, they still have a "Duty of Care" to treat your for other illnesses.

Try and pace yourself and be kind to yourself and hopefully some of my fellow members will be able to give you some advice.

My son was diagnosed originally with gait issues, slightly flat footed as he used to go over on the side of his ankle and we were given a couple of physio sessions. I got gel arch supports for shoes and we were also told to get the resistance exercise bands (I got the Thane ones) and shown some exercises to strengthen the ankles and correct the flat footedness. Once sigbed off, he stop using them. That was really the beginning of our story with FND and CRPS...

Are you getting physio support?

[lorettapalmer in reply to Lady4]

Hi Lady4

Thanks for your message. Good to hear your son is getting there. My story was I lost the feeling in one side of my body over night from face to feet and after ruling out stroke and everything else the neurologist came to see me at my hospital bedside and said you have funcational gait disorder, there is nothing we can do and discharged me!

After fighting and fighting, and more fighting as I was left with no feeling from my chin downwards, I was refered to a specialist centre in Bristol (about 30 miles away from home).

I went through courses of Phiso and after 6 months was discharged as they couldn’t do anything else for me.

I now 12+ years on, work part time and manage with my scooter and walk stick to get around. Feel like the system has forgotten me and left to take the 20 plus pills a day and get on with it

The latest story with a gp was I was seen by another new gp at our practise who said what is the name of your condition when I said Funcational Gait Disorder, she typed into her pc Gate as the garden gate! Not even knowing what a walking gait was!

Thank you again for your story about your son. Phiso now is what I do daily to help myself and in the swimming pool I can walk and feel normal! Has your Son tried swimming? I would recommend it as it helps my muscles

Thanks again

Loretta x

[Lady4 in reply to lorettapalmer]

I never knew all your symptoms could be caused by Functional Gait Disorder, thought it was more to do with how we walk, will read up as curious.Sorry to hear that you have reveived such poor treatment

When you mention treatment in Bristol, do you mean the specialised Rosa Burden Centre?

[lorettapalmer in reply to Lady4]

Hi Lady4

Thank you for all your messages today, yes the burden centre, I went there first when they were at Frencray, and when they moved to Southmead it was like a different team. Hope you had more luck with them?

L x

[Lady4 in reply to lorettapalmer]

We don't need them currently, were the first team or last tean better?

[lorettapalmer in reply to Lady4]

First team, had a smaller team and got to know them well. When they moved and had more people, struggled to know who knew me and my case.

Glad you don’t need them 👍

[Lady4 in reply to lorettapalmer]

I also found this on our UK site but can't see how numbness from chin down can be associated with FND unless intermittent. My son experienced numbness of his thighs and legs but that was believed to happen because of the pain signals were too high and the neurons in his brain chose a different pathway. I am sure you have more knowledge but just in case, I am sending you the link:

neurosymptoms.org/en/

[Lady4 in reply to lorettapalmer]

I found this during my research, it mentions different gait disorders, hope it helps:neurology.org/doi/10.1212/w...

[GrEeNbEeNs in reply to Lady4]

Hi lady4, I'm so glad that you posted the link about gait disorders it was very interesting I have a really bad gait problem that causes me to freeze when I try to walk I also can't walk a straight line and stagger all over the place I have asked to see the neurologist again and after reading your post I have got a lot of questions that I want answered by the neurologist,I won't be getting hit with a leaflet and left to get on with it this time.Thanks again and love to you and your son.🤔

[lorettapalmer in reply to GrEeNbEeNs]

Hi to both of you,

I also spoke to my gp, about my ongoing issues after reading it. Got fobbed off again and told it’s at least a year to see my neurologist again. Now waiting again for an appointment. Many thanks to you both x

[Lady4 in reply to GrEeNbEeNs]

Your welcome, I thought it was interesting to see some of the ways to determine what type of gait issue and that walking backwards in some cases was easy, I guess thats because your scrambling the brain message, ie doing what it thinks isn't as natural (afterall we learn from an early age how to walk forward). Thanks and hugs xx

[Lady4 in reply to lorettapalmer]

Ps. I paid for membership for our local pool as he loves swimming on holidays, we went twice in three months Sadly, he doesn't do much physical activity except PE when he is well enough to go to school.