Last reply 2 months ago
Advice please.

I’m hesitant to post this. I was diagnosed with multiple sclerosis in Oct 2018. Long story short I’m experiencing noticeable jerking constantly throughout the day (20xs per hour). Its motin one place but happening all over my body. When the jerking isn’t happening my bodg feels shaky inside and noticeable in my arms hands. Also i feel my neck goto the left and right in abt a 1inch movement when im completely still. My legs will lift and the back of knee caps will feel numb.

I started experiencing little twitch on Dec 21, I didn’t think anything of it. As the last three weeks progressed it became more stronger and noticable. I never experienced anything like this before.

I ended up going to the ER last nite. The doctor told me it was Neurological and I would have to see my neuro (Only met twice). She sent a fax over with her findings. I called today and they still couldn’t get me in for another three weeks.

My Question is: Should I go back to the hospital? I can’t take this anymore. I’m past terrified I just want this to stop!!!!!!

Thank you for taking the time.

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2 months ago

@canadianman – you are talking about a medical issue that simply can’t be assessed by us amateurs on the forum! Really sorry – it must be hugely frustrating.

What you are describing is a Doctor/Nurse first problem.

Easy to say I appreciate. Do you have an MS nurse you can contact? If not your GP/Family Doctor. If the problem has not improved then do go back to the ER/A&E. There is no shame in it.

Be prepared to wait there as you will be assessed with regards to whether or not the issue is deemed life-threatening. Annoying yes, not likely to kill you though.

If it is any consolation, in 26y I have had all kind of weird and sometimes alarming things. From excema flare-ups that go in a day to the most annoying and intrusive buzzing and zipping noises in my ears that made me feel like clubbing my head. They lasted 2 months at one point but they disappeared.

It really can be a bastard of a disease. Don’t let it grind you down.

2 months ago

Access to a neurologist and/or nurse seems to vary widely by country and region but given the severity of your symptoms three weeks is a long time. You note you are on Copaxone which is a very low efficacy DMT most useful for women that are considering pregnancy to carry you between DMTs during a change. They do, however, have a nurse line you could also try-

2 months ago

It sounds like a cerebellar issue. I figure your best bet is start with Coimbra Protocol,, add in LDN if that doesn’t work, then keep stepping it up from there. I’m on Tysabri for about 3 years now. One of a luckier few.

Your cerebellum incidentally is that walnut looking bit of your brain and the bottom near the back. If that’s not it, check your brainstem on your last MRI.

The most immediate fix you can try is the 2 tennis balls in a sock trick. Hospital lead-in times for what you need right now aren’t going to work

Kick and scream for Tysabri or better.

Please keep in mind that this is an internet forum. You probably shouldn’t heed anything you read here. Probably 🙂

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