Last reply 7 months ago
I'm not sure if I should be here.

Hi, hello.
I’m a newbie to shift.ms. I stumbled across this site looking for some sort of similarities to my recent predicament.
Warning: it’s a long one, so please feel free move on if you get bored.
So some background: 27yo Audiologist. Diagnosed with chronic Hemiplegic Migraines. 2016. Average 2 migraines a week for the past 2 years. Always starting with Right sided weakness and slurred speech, pain and resolved in a 24-48hr window.

As of evening 3rd Jan – got home from work and started to (what I thought) migraine. Right sided weakness (arm & leg) , slurred speech. 72hrs later, no headache and no improvement.
Monday morning, see GP. GP was quite alarmed at time length and sent me straight to a/e.
After 10hrs of being poked, proded and waiting, the speech had returned to normal. A CT scan and a check with the stroke team reassuringly cleared of stroke.
Drs then agreed to follow me up and send me home.

Friday – still no change in weakness. Pins and needles are intense and all over (comes/goes).
Back at the hospital for a follow up but unable to get an mri so they send me home.
I am so extremely tired now. Putting in a load of washing is enough to finish me off. I also can barely stand long enough to shower.

Saturday. Left arm/hand start to feel weak as well. Partner insisted this had to be checked so on advisement by out of hours GP, I’m back in a/e.
Checked over. Nothing more they can do until this magical MRI so sent home.

Today. Another hospital follow up – this Dr suggests theses symptoms are ms. She still stresses that only neurology can diagnose this and so decided to start chasing up MRI appointment.

Everything is so stiff on my right side. If I sit or stay too long it is super hard to get moving. I have random burning sensation in my hand, foot and face (right sided)

I have neurology app at the end of the month.
My symptoms come and go throughout each but never truly feel ‘normal’.
It’s been almost 2 weeks and I feel a bit in limbo. Being of healthcare background I did check my symptoms(reputable sources, NHS ms trust etc) before today’s appointment and did see the links between them and an MS diagnosis, so I wasn’t super shocked it came up.
A lot of the a/e doctors felt this was stemming from a migraine, but say it is unusual. Migraines arent fully understood and from what I gather, neither is ms. I’ve never experienced this before and I have never experienced L sided symptoms. I do appreciate migraines can evolve over time but I feel like this is just different.

However from reading a few of these posts it seams that people have episodes of symptoms for ages, before the diagnosis. So who knows what I’m in for.

Disclosure: I am fully aware that I do not have a proper diagnosis. I understand that any help or comments that follow this are not a substitute for a neurology opinion and will not consider them as such.

I’m just sat in bed, unable to sleep because my body is on fire (pins and needles) and I have no f***ing clue what is going to happen to me.
I’m also not sure if anyone gets this, or if anyone can understand this “limbo” like period.
I’m also unsure what to do regarding work, as I currently don’t feel like I can drive with this unpredictable nature on my right side.

Tomorrow morning I have a telephone appointment with the GP. Hopefully they can help at least with the next few weeks whilst I wait for these future appointments.

Sorry for the long thread. I’m just really yelling into the void. Not quite if this is even allowed and I can disappear if I’m shouting to the wrong crowd.

Liv.

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wendyhills
7 months ago

@porkyliv I wonder what is happening to you. Must be very scary some of your symptoms seem similar to symptoms of MS but I’m no doctor. I’m struggling to sleep myself and although I cannot offer any advice or words of comfort I just wanted you to know your not alone out here. It’s in the night when I feel most alone I often struggle to sleep and this site always helps me. Hope you get some proper advice tomorrow or at least an up date on this MRI and I shall be keeping an eye on any news on here. Good luck xx


grandma
7 months ago

@porkyliv you are in what we call Limboland. It’s quite true that only a Neurologist can diagnose ms. There are criteria that have to be filled, usually following a lb, MRI etc., if you are in the medical profession you already have the basic knowledge, I know it doesn’t make the waiting any easier. If it does turn out to be ms, as I always say one wouldn’t wish this diagnosis on your worst enemy, but at least you would get access to dmt’s and from this point of view you have ‘picked’ the right time to be diagnosed. MS is no longer a life sentence, you should be able to lead a ‘normal’ life. Don’t panic, don’t stress because if it is ms, stress is the wort thing for ms. Keep your chin up👂🥊👹😍


stumbler
7 months ago

Hi @porkyliv and welcome to our exclusive club.

I’d love to give you a definitive answer, but with your background you know that’s not possible. Yes, it does suggest that MS could be one diagnosis, but MS is notoriously difficult to diagnose as other conditions with similar symptoms have to be eliminated first.

Is migraine a precursor of MS? It was in my case, I believe. But, in my case, the migraines stopped in my latter 20s and my MS started. This connection has yet to be ratified.

Yes, we all understand Limboland, a very frustrating place to be. But, as you know, all things take time. That is unless you can fund a private consultation to expedite the diagnosis and then return to the NHS list.

In the meantime, you have to look after yourself. Get yourself signed off, so that you don’t have to worry about work.

Have a word with your Doctor to see if they can prescribe something to help with the neuropathic pain. The following article may help :-

https://www.mstrust.org.uk/a-z/altered-sensations

Then take it easy and see if your body will respond favourably.

Generally, live healthily, eat healthily and yes, avoid stress.

There is life after MS, if the diagnosis goes that way.


vixen
7 months ago

Hello @porkyliv, yes, being in limbo is the worst. But, at least you have an appointment now. So yes, it could be MS but also a range of other things. I would highly recommend that you don’t continue to research, as this will only make limboland more stressful. Try to make a list of symptoms and timings. Although my diagnosis seemed to come out of the blue, afterwards, I was able to think about times over 10 years that an illness like a cold always seemed to come with a period of cognitive lapse and confusion,. There’s no way to know if that was early MS but I think it was. For now, you can’t change what’s going in so try and remain calm and rested. Eat well, but treat yourself well. Please let us know how you go…..


Anonymous
7 months ago

Thank you everyone for commenting. I appreciate the time you’ve taken to reply. I’m glad I’m not the only one to experience this frustration.

I spoke to the GP today and they have signed me off until after my neurology appointment (29th). I am happy in one sense that I have the time to rest, but work will be quite aggregated about this. Sadly with chronic migraines my attendance is already questionable, but like @vixen said there isn’t much I can do about it!

The hospital rang to book the MRI (head and spine) for Thursday evening. At least I have that in place now.

Again thanks for your kind words, I do appreciate it.

Liv


rach_ls
7 months ago

@porkyliv Good luck with the pending appointments. I’m glad you’ve taken some time for yourself too-it’s all a lot to deal with!!

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