Can’t believe that I’m posting about something else

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AJLang

AJLang

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Type 1
Doing my 20 metre walk in the garden as recommended by physio - half way through my brain couldn’t work out how to make my legs move - they didn’t feel weak or anything but I just literally couldn’t move them - luckily Mark was able to get a chair for me until I could move them again three or four minutes later. This happened the other day when I wanted to go up the stairs and at least once more a few weeks ago when I wanted to get out of bed but couldn’t get myself to move. Wonder if neurologist will blame it on the migraines again...
 
You deserve a break, Amanda. I’m sorry you’re having to deal with this endless cr*p. I really hope they can use your symptoms to give you a helpful, accurate diagnosis.
 
How very disconcerting that must have been.
 
Thank you everyone I do hope that I get answers and it’s not just all passed off as migraines - not that I want something else but I want something that responds to treatment.
Jenny I was strangely calm at the time it happened but it did subsequently upset me. I don’t know what I would have done if Mark hadn’t been working at home but from next week he will probably have to start going into work more often. Thankfully I’ve got my pendant alarm if I should need it.
 
Just migraines . Hemiplegic migraine is a rare disorder in which affected individuals experience a migraine headache along with weakness on one side of the body (hemiplegia). Affected individuals are described as having a migraine with aura. These are soul destroying and I hope they can help you but migraine is not just a headache that take two tablets and lie down in a quiet room fixes..... I do hope you soon feel better. I cannot comprehend how you feel but my heart does go out to you or anyone with loss of movement it is scary. All the best
 
Thank you Nayshiftin. I completely understand about migraines and sorry about your experiences. I was diagnosed with silent migraines nearly four years ago - no head pain but a lot of neurological issues that affect my speech, cognitive function, use of my arms, weakness in my legs and vision problems with these affecting me several days a week. It Has been a scary journey and now there are these Other things. I just want something that can be treated relatively easy. Unfortunately I’m still feeling like this despite being on the maximum dose of candersartan and the maximum dose of amitriptylene that I can tolerate. I’m scared that will have problems walking around my small home.
 
So understandable you feel this way. One can google and speculate it could be anything and none of it helpful to you. Sorry I was not saying it as if you belittled rather more that if it is it is something that can be . However reading what you say is complex. Writing words sometimes does very little to help or express the empathy I feel with you. I hope it resolves soon. Keep us posted.
 
Nayshiftin said:
So understandable you feel this way. One can google and speculate it could be anything and none of it helpful to you. Sorry I was not saying it as if you belittled rather more that if it is it is something that can be . However reading what you say is complex. Writing words sometimes does very little to help or express the empathy I feel with you. I hope it resolves soon. Keep us posted.
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Thank you very much I really appreciate that x
 
I hate to say it (because it would be good if it were something fixable) but that does sound like it could be part of your ME, Amanda - messages not working between brain and body is really par for the course with ME.

AJLang said:
... I wanted to get out of bed but couldn’t get myself to move. ...
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This happens to me nearly every morning - sometimes it takes a couple of minutes for the message to get from my brain to my body that my body needs to move, sometimes it takes half an hour. I used to ask R to sit me up on days when it was bad, as I found that once my body had started moving it was easier for my brain to get it to keep moving, but I had to stop asking him after he fractured his spine, so now I just have to wait until the messages get through. I think it may be partly to do with blood pressure (I have supine hypotension as part of my ME) but partly just brain getting generally fuddled.

I've had it happen to me on a couple of other occasions - I think it happens if my brain is overwhelmed, it loses control of my legs. The last time I walked into a shopping centre, the combination of noise, lights, and chemical smells overwhelmed my brain and my legs went out from under me - I had to crawl back to the exit on my hands and knees and then sit on the pavement for half an hour until I could stand up again. I've also had the same thing happen after a trip to an optician who was not at all understanding about my ME/MCS and overwhelmed my brain.

The only positive thing I can say is that it has never lasted very long for me, half an hour at the most, and it has not got worse over time - though after the latter two occasions I did need to rest more than usual for the day or two afterwards. Is it possible you have been overdoing it lately, or had lots of sensory stimulation which might have left your brain more overwhelmed than usual?
 
Thank you Juliet. It’s certainly something to consider although in the last fortnight if anything I’ve had less stimulus than usual because apart from appointments I’ve been chilling out. I will speak to my neurologist when I have my appointment on Thursday. I also have a private appointment on Wednesday with the rheumatologist who originally diagnosed my ME about my spine issues so will discuss it with him as well.
 
Have the appointments been stressful or worrying at all? - because I'd imagine stress could cause something like that too - it always makes my ME symptoms worse when I'm stressed. But whatever is causing it, it's good that you have medical professionals you can discuss it with, Amanda - even when there's nothing much they can do at least there is some support there for you x
 
So sorry to hear this Amanda - as if you don’t have enough to contend with. Really hope the powers that be can get to the bottom of it swiftly and resolve it xx
 
I hadn’t noticed this thread, so apologies Amanda. Happens to me a lot, that sort of thing, usually not seeming to be able to get out of bed. Nothing obeys instructions. It also happens if I just stand up to walk - it can seem an age before I can actually move, it’s as though there’s a negotiation going on that I’m excluded from, but then me and my legs are going through a rather messy divorce.

Happens in lots of neuro conditions, Parkinson’s is the classic one, just locking up. You’re seeing a Neurologist anyway, so it’s well worth mentioning that to him/her, it all helps to guide a diagnostic line.
 
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