Any neurologists out there?? I am so fucking terrified.

[alifromtheforest]

I've been having these weird symptoms for four years:

Sudden loss of muscle control in my legs, causing collapse.

When I fall my body will jerk spasmodically for 1-2 seconds. I do not lose consciousness and I am able to stand up immediately.

I have regular muscle jerks during the day (little ones). They don't affect my day to day life.

The drop attacks are usually brought on when I'm trying to do something co-ordinating - eg play tennis or run on a treadmill.

I always know when one is going to happen, I get a second's warning so I know it's coming in my brain but I can't usually stop them.

If I blink hard I can send electric shock type feelings down into my arms.

IMPORTANT : It doesn't happen if I've been drinking alcohol and it's always worse when I have a hangover.

It hasn't got any worse over the four years. It just suddenly started happening, quickly ramped up and now it's pretty stable.

I struggle with stairs because I'm so scared of it happening. Ditto with escalators. If I'm holding DP's hand then I'm absolutely fine. It very much seems to be almost a mental trigger.

I've been seen by a neurologist and had a full examination. Everything was normal, except my knee reflexes were "just about within normal limits". I was referred for an MRI scan but I just couldn't do it. I'm planning to get a sedative and re-book.

It's taken me YEARS to pluck up the courage to get this dealt with because I've been so scared. I've hurt myself badly once or twice when I've fallen.

I know there won't be a definitive answer to this, but I would love some opinions. I am desperate for answers!

Relevant facts: I've been through a LOT of stress over the last few years. I've put on a lot of weight. I'm on anti-psychotics for bi-polar disorder, diagnosed 3/4 years ago.

Sorry I'm not a neurologist but it sounds very much like my dsd's problem. She has epilepsy, both sorts - petit and grand mal, (although I know it's called something else now).

I was going to say epilepsy.

Possibly MS? The symptoms vary so widely.

Didn't want to read and run - no experience of your symptoms, but understand neurological issues can be frightening, I have had problems myself lately, but very different symptoms (stress-related). All I can advise is get that MRI - I was incredibly nervous but it was actually fine and even if you're claustrophobic you have mirrors set up so you can actually see out and headphones with music or radio playing. It was nowhere near as bad as I expected, and could give you the answers you need.

I have had a few MRI's...they are really not as big a deal as I had expected before the first one...I am extremely claustrophobic, but they have ways of helping with that and they don't hurt. I spent the entire time writing a letter in my head to all the geniuses who have managed to send rockets to Jupiter, but can't design a machine that is quiet when its gears turn. Oh, and if they can't/won't sedate you, you are allowed to have alcohol before hand, so I went out for a sushi and sake dinner before having mine and it definitely helped.

There is a link between epilepsy and bipolar...by the way.

Epilepsy or MS would be my (unqualified) guesses. Sending hugs. MRI was less scary than I'd expected x

Due to the fact you mentioned stress have a look at functional neurological disorder, you often appear neurologically “normal” on testing, it is often treated with both physical and psychological therapy.

Sounds a bit like focal seizures. I'm epileptic but have tonic clonic seizures. There's loads of different types. Check out the Epilepsy Action site. Sorry I don't know how to make links clicky

www.epilepsy.org.uk/info/seizures/focal-seizures

pearl was just about to mention FND. its definitely something to keep in mind OP, it isnt always worse case scenario.

hope you get some answers

I assume unrelated to bipolar meds?

You definitely need to have the MRI. I agree with pp I think it’s functional

What's the issue with getting a MRI? The bed thing is comfortable to lay on, the machine is loud but they give you headphones and play music to drown it out. When I had mine, I was given a alarm in case I panicked and needed to get out quickly. The first three scans took 7 minutes each, then I had dye injected in my arm, and another scan. The whole thing took less than half an hour. Two doctors were watching me the whole time, and it was completely painless. If you're scared of tight places or the dark, it's not that bad as one side of the machine is open and it's very bright in there. There was also a mirror in the head helmet thing, so you could see the doctors, but I preferred closing my eyes. Before I had it done, I assumed it would take hours, and would hurt, but it was the quickest and easiest medical exam I've ever had!

OP, you know you need to have an MRI. As PP have said, they are no bother at all. I have a brain tumour, discovered after a few seizures (to reassure you, nothing you describe is similar). The worst bit of the whole thing was the period between the tumour being spotted and getting the biopsy results. Not knowing what's wrong and living in suspense is incredibly stressful. You've been doing that for four whole years! Please grant yourself the release of finding some answers. No matter how 'bad' the diagnosis, I promise it's easier to deal with something concrete than living with that level of fear and uncertainty. Take care

Have you discussed this with your psychiatrist. It could be a fall out from your meds. My dh has bipolar and he gets some jerking in his sleep from the meds.Its quite similiar to a minor epileptic episode. He is not aware of it as asleep. I have never seen it happen to him during the day but it might be similiar. Maybe your meds could be changed.

DSis had PTSD and real problems having MRIs. They allowed me to go into the room with her and I would stand at the bottom of the bed and hold her ankles so she would know I was there. They also set up a mirror contraption that meant we could maintain eye contact throughout. The radiologist (?) would stop the machine every 10 minutes or so to check she was coping and would ask for permission to continue.

She got to choose the music which is played to drown out the sounds. All the staff were very sensitive and caring - I think they are well used to anxious patients.

Thank you so much everyone. I really appreciate the kind words.

To answer a few questions - this is unrelated to bipolar meds. I've had long chats with my psychiatrist about this because it seemed like a simple link to me.

I'm as sure as I can be that it's not MS. My dp is a GP and he's said that. However the rest of my symptoms go beyond his remit so he isn't able to give any more advice.

What is FND??

I tried to go through with the MRI. I had a couple of drinks beforehand and thought I'd be totally fine. But they put a huge mask/neck brace thing on my head and started sliding me into the tube without warning and I totally panicked. It sounds ridiculous but I just couldn't do it. The staff were very kind though and advised me to get diazepam and try again.

I think the sleeping jerks are normal, the lesser day time ones, not so much.

No, I didn't think there was a link between bipolar and epilepsy?

Thank you all again for your words. They're really helping me come to terms with what's happening to me.

I suggest you look up:

Myoclonic seizures (jerks)
Atonic seizures (drop attacks due to muscles relaxing)

Also, I'd try to get a relative or friend to film you in the day, when the jerks might happen. Videos are often helpful to neurologists. I'd ask for an EEG.

OMG - I've just googled FND and my symptoms fit exactly! Even ones that I didn't know that I had - memory/concentration. I am FOREVER putting my phone/book down and then not remembering where they are seconds later.

My concentration is poor, I often have to re-read paragraphs in books and I don't feel like I'm engaged with the text.

I'm feeling tentatively relieved now! Obviously I'm still going to have the MRI done, but I feel like maybe there might be a partial diagnosis out there for me.....

Have the MRI. It also may be worth looking up dystonia which has similar physical symptoms.

Top tip for the MRI, even if they let you take diazepam:

Before they put the head thing on you, close your eyes, and do NOT open them again, no matter what. There is plenty of air going through the machine, so unless you open your eyes you would never guess that you are in an enclosed space. Get them to tell you when they are taking the head thing off, and open your eyes then.

for you, it's a really horrible thing to have to go through.

I think I have something similar (undiagnosed), although my symptoms aren't as severe. Lifestyle changes helped me; my symptoms were at their worst when I was taking antihistamines (nytol) to help me sleep, especially when in combination with alcohol. Perhaps try a sober month and see if you feel different?

With the MRI, have a diazepam, also make sure you wear the mirror glasses they provide. I've has 2, the first was horrendous as I massively panicked, the second they have me the glasses and it was nowhere near as bad because I could see the people through the mirrors.