What's happening to me???

New diagnosis and before diagnosis
1

Hello, everyone, and I hope you’re all well?

I’m currently in the process of being diagnosed with something. I’ve been going through something for just under a year, and I’ve never been so scared. I should preface this by saying, I’ve no idea if these symptoms are linked, or separate issues.

Started one morning when I woke up before my alarm clock with absolute paralysis of the entire body except my head. This wasn’t psychosomatic. If a person put a gun to my head and told me to move, I wouldn’t have been able to move.

This has happened a few times in the morning since then, but also late at nights. At nights, I can feel the symptoms coming on. My arms and legs feel like they’re ripping and tearing for an hour, and then it’s absolute paralysis. I should note this tends to last for about 2 hours, at the end of which, I sustain a short term, but very obvious, waddling gait.

In the past, I’ve also had on/off slapping gait. This has happened primarily after crossing my legs on public transport and lasts for about 15 minutes or so. This has also happened sporadically without leg crossing about 3 times in the last year - again, not for long.

More symptoms:

I’ve lost about 10 kgs in the last month.

On/off tingly feeling in my feet/calves/hands for over a couple of months.

For the past month, I’ve had twitching everywhere, but a lot of the calfs and feet.

Eyelid drooping.

Eye floaters which I’ve noticed in pictures of my eyes. Can notice them through vision when staring at light, and then my phone. (I’m awaiting an appointment with an optician to see if this is Optic Neuritis).

Postnasal drip for a few weeks.

I’ve been clumsy with light things in my hand for a while now.

I’ve stubbed my toe on the floor a few times in the last two weeks, and sort of tripped.

On/off thumb pain and weakess for a couple of weeks.

Random shooting pains up my right calf for a while now.

I should say, my Dr was under the assumption I had Perioid Paralysis which explained the muscle paralysis, however, we need to wait until an “attack” to be sure. He also said, that didnt explain a single one of the other symptoms. He said it’s likely to be MND/MS.

I REALLY don’t mean to diminish your troubles, but the idea of MND is killing me. I’ve barely slept since Wednesday, and was hoping anyone here could identify with my symptoms.

Thanks all.

2

Hello sweetheart.

I fully understand your fear…been there like most of us. It can be quite terrifying when our bodies suddenly do strange things we can’t control.

Some of your symptoms do sound MS like. MND is worse, I know.

Try to hang on love and let’s pray it will be sorted soon.

Jesus is my companion and my strength. He is there for you too.
Sending much love, Boudsxx

3

Hello,
Welcome. How are you?
I had constant tingling/pins and needles in both arms and legs, earlier this year, it’s usually signal for me of a heavy relapse coming on and I need a prednisolone steroid hit to get rid.
I’m always tripping over, I think I have drop-foot in both feet these days.
Eye floaters I do remember as far back as primary school age, I just thought I needed glasses; I dìd suffer temporary sight loss in one eye later on though, due to optic neuritis.
I used to call the Lhermitte’s Sign, shooting pains too, back in my teens.
I lost a few stones in weight, due to hyperthyroidism; I did read multiple sclerosis and thyroid disease can be interlinked.
It’s good you’re on the system now, so you can receive your diagnosis and treatment.
Yes keep the faith, you will get better,
JP

4

My goodness, that sounds frightening. Has your GP referred you to a hospital specialist for investigation?

I am sorry that you are having such a worrying time.

5

Hi there and I can well understand why you feel scared. I’m no medic so this is all guesswork. I hadn’t heard of ‘periodic (?) paralysis’ but from a quick bit of searching and reading, your symptoms do seem consistent with PP. I suppose the bad news is that it’s difficult to diagnose but the good news is that in the main it looks as if it’s possible to manage.

Has your GP referred you to a neurologist and for further tests?

Floaters - my immediate thought is ‘ to a greater or lesser degree doesn’t everyone have these?

Again, I’m no expert but I think optic neuritis usually manifests as some loss of vision. Certainly in my case I lost pretty much all vision in my right eye ( the left eye was unaffected)

I am thinking that you would be very, very, very unlucky to have PP and MS or MND.

6

Hiya, yeah, I’ve had thyroid issues in the past. That, and the paralysis is what made him think I had periodic paralysis.

For what it’s worth, I still think I have Periodic Paralysis. When you see a video of it on YouTube, you cannot really mistake it for anything else.

But, like I said, it doesn’t explain literally everything else. I’m living in utter hell, at the moment. Every second is horrid

7

Hiya, yes, I’ve been referred to a nuerologist, but I’m yet to hear of any date this might be.

I’m living in utter hell. Every single thing my body does, I scrutinise.

8

Yes, the waiting’s a misery, there’s no two ways about it. I’m glad you’re at least in the system now. It’s a long road sometimes, but the longest road is the one not yet started, so it’s good that you are now on your way to finding out what’s going on.

Looking back I feel that was lucky because the even nastier alternatives to MS had never even occurred to me! That’s a lot you have on your plate, and no wonder you are having a bad time. Nothing for it but to just take one day at a time and get through them one by one. Fingers crossed, your worst fears will be eliminated quickly from the suspects list. Whatever’s left, you’ll deal with.

9

I get periodic weakness and loss of coordination too, especially with my walking, that’s why MS is so unpredictable; it’s like fingers X and hope for the best if I need to hot foot it sometimes.
Hope you get your health problem sorted, all the best.