Last reply 2 months ago
Struggling

Going through such a bad time at the moment, can’t even look to the right without getting the feeling i’m going to puke. Legs are like jelly, wearing a pad like non-stop and simply can’t look without wearing an eye-patch to prevent the double vision.

This is a B**** of a relapse!

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stumbler
3 months ago

@jayjay10 , I do hope that Steroids have been discussed and prescribed.

These are not a quick fix, but will expedite the end of the relapse so your recovery can commence. Steroids are usually administered for relapses that adversely affect your quality of life.

If Steroids haven’t been administered, you need to contact your MS Nurse.


itsmewithms
3 months ago

Also from what I have read in other posts the dose of the steroid needs to be discussed. Others have said they were given very low doses over several days and didn’t see impacts. When I was having an active flare I had an IV placed on my arm that I would hook a little ball of prednisone to (like the size of a grenade) and it would infuse in about an hour. Each day I would flush the line to make sure it was still viable and hook up another grenade and sit quietly and watch TV. Over a couple of days most of my symptoms would disappear. Of course you wouldn’t want to do this very often and I think I did these high doses for 5 days and then a tail off pack of oral steroids for another 5 days. They worked great for me but if you search Prednisone using the little magnifying glass it really doesn’t work well for others. According to my Dr some say they can’t sleep and had the urge to clean windows at 2 AM…I never did, hence the state of my windows ;-0

It seems I have moved to SPMS so am not having flares they can see on an MRI so they will not prescribe what was a magic fix for me. My Dr would only prescribe when I had an active flare visible in my MRI and I was in the RRMS stage.

We haven’t seen that listed in your arsenal so as @stumbler mentions you may want to inquire why-
https://www.healthline.com/health/steroids-for-ms#treatment


jayjay10
3 months ago

Hey guys,

Thank you for the comments.

I have scheduled an appointment for tomorrow with my GP, hopefully he can prescribe me the tablet form steroids as I just cannot imagine spending more time at the hospital.

All the best!


stumbler
3 months ago

@jayjay10 , you need to familiarise yourself with these details, especially the dose :-

https://www.mstrust.org.uk/a-z/steroids-methylprednisolone

The required dose is very high and alien to a GP, who might only want to prescribe a much lesser does. And anything less is not worth taking.

You may want to print that webpage and take it with you.


itsmewithms
3 months ago

Also-for the high dose steroids I received I spent 0 time in the hospital. The nurse visited me at work, placed the IV line and started the first course to make sure I understood how to flush the line and connect and disconnect the pump ball. The next day I just flushed per instructions and hooked it up and it infused while I watched an evening TV show.


jayjay10
3 months ago

My GP told me that this is a flare up and that the symptoms will pass in time given how long I have been experiencing all this for.

It would be good if I can get through all this without any steroids.


karlsohare
3 months ago

@jayjay10 can you ring you ms nurses? I find them loads better then the gp as there a jack of all trades masters of none and the nurses are more specialised in your symptoms etc.. when I’m relapsing I ring mine and they also send me to the relapse clinic where I see my consultant and they come up the best treatment for you with what your experiencing.. get well soon x


jayjay10
3 months ago

@karlsohare

I do try to get in touch with the nurses and neurologists but the Walton Centre claims to be closed each time I try and they say to try back later or the next day, yet it’s early
when I try. 😂

I wish I got the same responses and treatment as what you do haha. All the best! x


karlsohare
3 months ago

@jayjay10 I’m with the Walton centre I do tend to hound them. There only open weekdays 9-4 or ring switchboard an demand to be put through to them.. hope things get better for you all the best bud x


jayjay10
3 months ago

@karlsohare

I am currently with (name removed in respect of house rules by admin), he is just so stubborn. He never recommends any treatment for me as he thinks that I should just live with my symptoms and manage them the best way I can without treatment.

I am going to be calling them 24/7 from now on. 😉 x


itsmewithms
3 months ago

I see a couple of other things in your profile- that you were diagnosed 14 years ago and not on a DMT. Have you had an MRI to check on this flare-up? If there is an active flare the steriods would be appropriate…the high dose IV, forget the small dose tablets. Vision is a huge quality of life issue and my neuro takes any vision issues very seriously.

If there isn’t an active lesion have they considered if you are moving into SPMS? There isn’t really a good test for this but rather just a review if you seem to be having a gradual creeping of symptoms instead of flares. The fact that you are having a noticeable active flare may actually be a good sign that you aren’t SPMS…but one affecting your vision should be shut down ASAP IMO.

One of the “benefits” of being on a DMT is that I always had a nurseline with the medication that was a good advocate. I’m in the US, not sure if they are quite as aggressive over there but they really pushed the system for me when I needed it on weekends or holidays.


karlsohare
3 months ago

@jayjay10 I don’t rate him went to see him at the relapse clinic he said the numbness in my hands was in my head an I need to look at the bigger picture he’s a bit of a Richard.. mines (name removed by admin) and he’s sound.. what ms nurse do you speak? I find being direct and a bit cheeky gets me somewhere. Yeh mate just hound them defo sounds like you need some sort of treatment you could ask (name removed by admin) for a second opinion if your not happy with (name removed by admin).
🤞you get it sorted x


mavisdavies
2 months ago

Omg @jayjay10 and @karlsohare I’m with the walton centre and the neurologist I saw sounds very much like this (name removed by admin) . It does appear that you are lucky if you get a good one.


jayjay10
2 months ago

I can’t deal with this, think that hospital care is much needed now.


stumbler
2 months ago

@jayjay10 , you have to do what you feel is right for you. Good luck.


acceptance
2 months ago

@jayjay10 ffs sorry u are still in a bad place mate

It seems to be that the docs can deal with MS in the early days, but when it becomes troublesome, they run out of ideas.

You sound exhausted and tired of the whole shebang…and just when we you feel least like fighting, that’s when you have to the most, using what little precious energy you have… v frustrating, exhausting and frankly soul destroying

But us lot don’t give up eh?

Have you spoken to your GP? Well get them on board and they can pester the Wally Centre too and maybe even an urgent referral- even if it is just to the elusive MS nurse, in the short term

Pester them until you get to see someone, and rope in someone else to help bombard them. You need to be seem ASAP. I’m no doctor, but even I can work that one out

In the meantime get together all of your coping strategies and use them – if that means lying on the sofa all day watching Netflix nappied up eating dominoes, then so be it. Needs must for now lad.

One day at a time – just one day at a time Jayjay10

Hugs


mgriffiths5
2 months ago

@jayjay10 – it strikes me that the care — or lack of it — that you are receiving is simply inexcusable. You should be on a DMT, and you should have access to a relapse clinic and associated care.

If I were you, I would use all your energy to get that in place. The NHS hate formal complaints, because they are legally obliged to address everyone. I would think about making one of those, or at least threatening to make one.

I would also speak to your GP – not just about your symptoms, but about the care that you have been receiving and how far off it seems from NICE guidelines. The aim would be to recruit him or her to point out that this is simply unacceptable to the Consultants and nurses who should be looking after you.

My experience – with the NHS, but in London – is that what you are experiencing is not usual or tolerable.


jayjay10
2 months ago

Hey guys,

Thank you so much for all the advice and support, I seem to finally be recovering from the worst of it. My vision is almost back to perfection, I suppose I have to thank this eye-patch iv’e had on for the past month or so.

The vertigo which brings the dizziness is subsiding so I expect my legs to be normal or shall I say back to the way they were in a week or however long it takes.

Once again, thank you so much everybody, it is greatly appreciated.

Jay x


itsmewithms
2 months ago

I had posted earlier about how the high dose steroids in the infusion ball have helped me so much in the past. Just had ON the last couple of weeks and that is something that my neuro reacts to pretty quickly so he put me on a 3 day infusion of 1Gr/day. Again- home infusion so a nurse comes out, places the IV line and little grenade infusion pumps are hooked up each day. Just one nurse stop, no hospital and at the end I just slip out the line and place a band aid.

My body, again, handled the dose pretty well but I didn’t see a radical quick response to the ON symptoms this time as I have experienced in the past with issues more in gait, balance and speech. Didn’t seem as effective for me now that I have moved to SPMS and the symptoms were ON related.

Just wanted to toss that out there…glad you are in a better place and working through it. I’m hoping that my vision improves but I still have blotchy spots in my left eye. No pain, thankfully, and hopefully it restores over time as you found yours did.

Good luck! keep us updated on what seemed to work or not- 😉

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