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'm so sorry to hear that. I honestly don't think you can do more other than wait for the neurology appointment.

Have the NHS provided her with a wheelchair? how is she managing the stairs etc? You must be so worried.

Has she had rheumatology bloods run as well?

Do you think back of head pain could be neck pain? There's so many things it could be so I don't want to worry you but this is one thing to rule out: www.childrenshospital.org/conditions-and-treatments/conditions/j/juvenile-dermatomyositis/symptoms-and-causes - needs specialist muscle enzyme bloods to be run to pick it up.

Is there any way you could afford a private paeds consultation? If you can stretch to it I would, whatever is wrong needs addressing very rapidly, I wouldn't hang around for NHS waiting lists

I don't have any medical advice but the appointment is the best way forward, I hope your daughter is seen soon and that the doctors can work out what is wrong. Best of luck with everything.

Thanks for the replies. She had 2 lots of bloods taken to check for vitamin deficiencies etc but I don't know more specific than that - just that the dr said there were was no infection. She has no walking aids currently, she crawls upstairs and goes down on her bum! She can walk a few steps and apart from that uses the furniture/walls for support. When she went to the drs she held on to DH. She seemed to go downhill suddenly and then for the past 1.5 weeks it's stayed the same. She also gets some dizziness and nausea.

Hi Paddington. My heart goes out to you, you must be so worried about your DD. I would second previous advice and not be content waiting to see a neurologist on waiting list. I would imagine the bloods were not showing inflammatory markers or you might have been referred to a rheumatologist. This sounds very sudden and acute deterioration. Could you go to Accident and emergency , have her admitted and then ar least there would be a lot of tests / scans done and she would be seen by a team.
A lovely young girl who suddenly can't walk , thats shocking, what I would do is go to Casualty and don't leave until she's admitted.
Dare I say your GP sounds a bit casual?????

Do you know what her B12 level is? B12 deficiency is missed by many doctors because the lab ranges are too low so they think the results are 'normal' when they aren't

Has anyone considered Guillain-barre syndrome? What you've described doesn't sound completely typical, but if no one's thought about it already it may be worth mentioning.

I was like that when I got me/chronic fatigue.

I couldn’t walk more than four feet without clutching onto something and all out of breath.

I was very stressed at work at the time. Very stressed. Crying daily etc.

All the tests came back clear and the gp started saying things like ‘“just build up your walking gradually and you’ll soon be back to normal”.
Er, I was fine one week and three weeks later I can barely cross the living room and he’s treating me like I’ve had plaster casts in both legs removed after six months and have muscle wastage. It was all so sudden. I was off work for six months and have never managed to return to full time employment since. I work part time now.

I hope your dd doesn’t have that, as a decade later I still have it. To a lesser degree, but it still affects my choices every day if my life so I don’t end up with symptoms again.

There are no tests for it yet, despite it affecting the mitochondria of every cell in the body. It is diagnosed after everything else is ruled out.

It is very difficult to get benefits for too as it’s a fluctuating condition with no diagnostic test to prove you have it, and a lot of lazy people pretending they have it to avoid working.

www.nice.org.uk/guidance/ng127/chapter/Recommendations-for-adults-aged-over-16#limb-or-facial-weakness-in-adults

Has she actually been seen and examined by a doctor or has the assessment been made over the phone?. What you describe sounds rather worrying. According to NICE guidance rapid onset leg weakness should be referred for immediate assessment (i.e within a few hours). Conditions such as Guillain Barre need to be excluded. I would really hope your that your GP has discussed her case with the neurology on call team and not just sent a letter.

In short I would not sit and wait for the OPA to come through. Good luck.

Guillaine Barre,

I had it, this is what it was like, nobody diagnosed it, nobody.
Insist on this being investigated or she has a long road ahead.

POTs?

The neurologist will be able to confirm or exclude possible causes. Due to the previous anxiety, you might want to read up about functional neurological problems or conversion disorders as they may be discussed if other illness is excluded.

I would be in A and E already. Seriously.

Guillain-Barre definitely needs to be excluded as a priority I would have thought.

It took a few blood tests for the doctors to pick up glandular fever when I was a teen.

I went from cycling miles to get to school/work to having to sit down walking downstairs. At first they put it down to exam stress.

How bizarre, I have a colleague suffering with this currently. She's about 7 weeks in now, and getting to the stage that she can almost walk to the shop again 15 minutes away, although she can't walk back, and can hold a conversation again. The doctors wasted a massive amount of time checking for covid repeatedly or antibodies for previous infection, all negative. Luckily, she is under a consultant for another lifelong illness which meant she's being looked at more closely. They are linking an episode with a migraine/ fainting a few months earlier, and are investigating a brain seizure, lupus and chronic fatigue syndrome. The doctor had thought a stroke or post viral fatigue syndrome, which often develops into CFS.

I've had Guillaume-Barr, as others have said recommend they test for this as a priority and it's sister condition as well - miller fisher syndrome. Wishing your DD a speedy recovery.

I think its probably not helpful or appropriate to speculate on what neurological condition the Ops DD may have as many of these are serious conditions. This could be very distressing and needlessly alarming. Probably sufficient to recommend that she seeks expert advice as soon as possible.

Like Scrap mentioned, If they exclude other things, it might be worth looking into functional neurological disorder. Especially as she has been struggling with anxiety and stress.

It must be such a worry for you. I have an autistic teen with anxiety and it's really tough at times. Hope things improve soon.

I think you need to call the Dr forst thing Monday and 1) request full copies of the blood results 2) ask about the status of the neurology referral and whether it is marked urgent and if not why not and 3) ask if any other avenues need to be explored.

My ex had Guillain Barre syndrome at age 16. His mum thought he was stoned as he like a spliff! Was in hospital for months, had to re learn how to walk.

I've been thinking about this. Go to A&E tomorrow. It's urgent. If you don't get answers, keep pushing. It took 2 A&E visits, countless GP visits, 2 private Dr appts before my daughter was diagnosed and was rushed to Great Ormond Street. As her mum you know whether this is something serious or not - listen to your gut.

Yes, me too @SpringIsSprung1, I was put into ICU for a month and then 3 months in a rehabiltation hospital learning to walk.

I still can't climb stairs properly.

I wish so much I knew about mumsnet then, the doctors has absolutely no idea what was wrong and I had so many misdiagnoses.

I would check all this out OP, all the helpful suggestions.
Guillan barre can be stopped in its tracks if acted upon very swiftly. It really can.

Many thanks all for your replies. Dd is no better but no worse either. DH suspects the dr thinks it's all down to her anxiety, but could this really render you unable to walk unaided??
We asked the psych about rarer side effects of the sertraline, as this all seemed to start when she was taking that. It hasn't improved since she stopped though. The psych said she'd never heard of this as a side effect.
Around the time of her sickness DD also had a cough for 2 days. I can't remember her ever having a cough before. Her temp also fluctuates a lot. She had a covid test which was negative.
She says she hasn't had any numbness or pins and needles.
We'll definitely have another conversation with the Dr, I wonder if we could go private if necessary. We're also due a phone call with her mental health counsellor on Tuesday.

I haven't got any answers for you, but wanted to say that yes, stress can cause that. When my ds was 10 he woke up and was off balance, barely able to walk, the next day could not weight bare at all. Hospital admitted him, he was on morphine and had to be lifted to the toilet etc... lots of tests and a transfer to London later, it was functional movement disorder/conversion syndrome. He was in a wheelchair for months, and needed physio etc... but with psychological input as well he got better. I'm not saying it is stress and all other things should be ruled out, but it could be.