DD could walk 3 miles a few weeks ago. Now she can't walk down the hall

[paddingtonbear1]

Dd (17) has ASD and bad anxiety. She was attending college on and off. She sometimes complained about pains in her legs but the dr said it was due to her anxiety. About a month ago she started taking Sertraline, prescribed by the psych. During the first week after she had what seemed to be a sickness bug - but could have been side effects? Then complained of pains in legs and shoulders, and back of her head. We had a call with the dr who advised stopping the medication (she'd taken it for 2.5 weeks by then). She stopped but the muscle weakness in her legs got worse, to the point where she now can't walk down the hall without falling. The dr doesn't know what it is (bloods came back clear) and is referring her to neurology. We don't know how long the waiting list is - in the meantime, she can't really attend college (she found the environment difficult anyway), as she can't walk unaided. Not sure what best to do apart from wait!

I know this is a far out thing but could she have had Covid.

I am usually quite fit and walk miles each day but after having Covid I couldn’t even make it to the bathroom and if I did it was a long struggle to get from my bed to the en suite without my legs buckling under me. I was like that for months.

Has she been tested for Lupus ?

My cousin developed Lupus aged 12, she went from being a gymnast to being unable to get off the sofa.......it can be brought on by hormonal changes. In her case going into puberty was the trigger.

It's important to understand that when the brain converts stress into functional neurological problems it is a weird and wonderful thing - not made up, malingering or anything.The sufferer can't control it. But treating stress and anxiety can help.

But do ask the doctors everything you need about other causes and make sure you understand how they have approached diagnosis.

I know people end up tunnel visioned on what they have experience in but I know from experience with my own child, not dissimilar symptoms were brought on by a virus triggering an auto immune disease. Keep pushing. Interestingly the normal rheum inflammatory bloods were normal in her case, but the specialist bloods were off the scale. Equally yes anxiety can cause all sorts of genuine physical symptoms but don't let them brush it off as that without exploring literally everything

How is your DD doing?

Hi OP, I was unsure whether to post as my response is pretty vague but wanted to mention it at the mere chance of it being helpful. Many years ago as a student I spent time observing on a child/adolescent psych ward. One thing that always stayed with me was how some patients stopped walking on their own and needed physical support to walk one was bed ridden, however I was told they had no physical symptoms to prove this was for biological reasons. One patient had been bedridden for sometime. I'm wondering if this is all linked to her anxiety as theirs was and if you haven't already (sorry if I missed it) push for support at your GP to CAMHS (long waitlist) or privately. I hope that is helpful in some way.

Hi paddingtonbear1, I’m really hoping you have had some answers already and your daughter is recovering. However I just wanted to add my thoughts as a couple of things jumped out at me. I’m recovering from Guillain Barré Syndrome having started being ill on 1st September. The one thing all the Drs kept asking me was if I’d had a stomach bug in the couple of weeks before.
Apart from losing the ability to stand and walk, I also had tingling in my hands and feet. As previous posters have said, it may be one of the related conditions, not GBS which is the acute version. It isn’t picked up through blood tests, scans or X-rays - needs to be a lumber puncture and a nerve conduction tests. I really hope my post is unnecessary! X

This must be so worrying! Poor dd. I took sertraline for a bit as did my sister. She was on it for longer I had less than a month and went back to citalopram. But one thing we both had was terrible restless legs on it. Just saying incase there's a relationship. Really hope you get answers soon.

Also when did she stop the sertraline? It does take a while to get out of your system. But having said that she did only take it for 2.5 weeks.

I think you will need to be really pushy on this. As it sounds like the GP has already written it off as anxiety.

How scary for you both - I hope you get some answers soon. I've seen FND mentioned a couple of times here and it sounds like it could be the reason as well as Guillaine Barre. There are charities you could approach to get more info - FND Hope (fndhope.org/) and gaincharity.org.uk/

I have CFS and this is how it started. A different medication was my trigger but everything else is identical.

Hi all! Thanks so much for all your replies, they've been really helpful. Dd seemed to go downhill again at the end of last week - after another convo with the GP we took her to A&E. They kept her in overnight for observations, took several bloods, did examinations, covid test etc. All the results seemed to rule out a number of things and the consultants were saying, physically everything should be normal - except of course it wasn't! The final consultant DD saw is fairly convinced it's down to FND. A few of you have mentioned this and I've been reading up - I'd never heard of it. The consultant is very interested in this area and had done research into it. We'll now get a neurology appointment to confirm (will probably involve further scans). DD wants to try medication again, but the psych has left so we need someone else to take her case. She did see someone from HYMS (our CAHMS) this morning. The last couple of days, her walking has improved slightly so we hope this will continue!
My SIL has CFS and it took years for hers to be diagnosed. Will speak to her about it and see what she thinks.

Has your GP actually seen and examined her or all phone calls? She needs an urgent assessment by your GP and for him/her take to

communicate with neurology.
It may be anxiety but may also be something else.
Your other alternative is to put masks on and go to ED.

Could it be discontinuation syndrome?

@paddingtonbear1

Just in case this matters. I had very similar symptoms as your daughter and I only got a diagnosis after a nerve conduct test.

Just thought if your daughter hasn't already had that test, it would be worth asking if she could have one.

Another thing to add: POTS and EDS. Ehlers Danlos Syndrome - EDS - is shown to have some kind of correlation with ASD. It took me years to get a diagnosis.

I was also going to add POTs and EDS too- again like pp understand there maybe link to ASD.