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Help Needed

Hello Guys,

Im new to this forum business but i got diagnosed around July with RRMS.

I have recently noticed the numbness returning and my legs feel like they are not attached, iv not yet fallen over but feel very close to it.

I have also noticed that when i go for short distance walks my legs tingle when i stand still, does anyone else suffer with this?

Iv never called my nurse about these since being diagnosed properly and i am wondering if i should bother her with this or leave it as it is and hope it will go away

Any advice or help would be great

Thank you

Hello AlethiaJayne. How are yer ? Make a note of it, ring the ms nurse if it makes you feel better, if not, keep record of what goes and when !! I don’t, so when I do see the nurse I’m like a few weeks back, and it’s probably a month or two… Andy

yup. i tingle after a brief but brisk walk.

it fades after about 10 seconds.

i liken it to being able to feel the blood coursing through my veins,

if you are anxious or in need of reassurance, then why wait any longer to talk to a ‘health care professional’ about it?

and are you taking tecfidera yet? if not, then i gotta ask, why not?

good luck and try not to worry; stress can make it worse! :slight_smile:

Paolo, can I ask why your dmt preference is Tecfidera please? What was it that swayed you to use this one? I’m doubting my own drug choice now. Diagnosed in May, I’m on Plegridy since July. Although no real side effects, I feel my walking has actually deteriorated and I had a relapse last week ending up in hospital for a week. Not what I was expecting, so soon and on the dmt’s. :frowning:

One primary factor was that I didn’t fancy a future filled with needles. So i concentrated on finding an oral based drug.

However, i researched all of the available options and was pleasantly surprised to see that the most effective, first line drug was Tecfidera.

The side effects sounded a little daunting, but i figured a few hours of nausea was still preferable to several days of flu like symptoms.

I needn’t have worried; the side effects i had were easily managed and short lived. Admittedly not everyone can acquire such a strong and immediate tolerance; to those i sympathise, as i remain grateful for small mercies.

My diet is not constrained by the drug; there is no special storage or administration concerns or rituals. i simply pop two pills daily, one pill at a time, at least four hours apart, on a fairly full stomach. And i am good to go.

I liken it to just another dietary supplement / vitamin capsule. It is that easy and it supposedly reduces the risk of relapse and disability progression by half. If i can wait 20 years to be in my wheelchair instead of just 10, then hells yeah!

Good luck!

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it fades after about 10 minutes (not seconds… who would even notice it if it were only 10 seconds? i’m a dumb-arse.)

Thank you. :slight_smile:

Reading a lot more about it now and willl be speaking to ms nursie to see about a change. Expecting a small battle though as it’s only been a short trial period so far, but surely it’s possible.

Thanks again.

Personally, I’m stunned that someone newly diagnosed with RRMS is given Plegridy rather than Tecfidera as a first line drug. Yes, you take Pelgridy only once a fortnight rather than daily, but its efficacy is only expected to be 30% less relapses (as far as I understand it, but that info is not easy to come by in a cursory Internet search) rather than the 50% of Tecfidera. The only reason I can see for Plegridy as a first line option is if you tried Tecfidera and couldn’t get on with it.

Sue

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Yes Sue, I’m begining to feel that way myself. TBH, I found the whole “choose your poison” option rather overwhelming! I was handed a pile of “books” by the ms nurse, from the various drug companies. I was told to have a read and see what one jumped out at me. Plegridy it was, quite simply because it seemed the easiest to remember to take/administer. Hindsight is wonderful! I’ve re-read the information booklets and have printed off info, so I am armed in advance now, when I tell my nurse I want to change, Could be interesting.

AlthiaJayne. I’m so sorry! I never meant to hijack your thread. One thing just lead to another and, well…sorry! x

For what it’s worth, I think you most definitely should get in touch with your ms nurse. It isn’t a case of “bothering” her. It’s what her duty is, to be there to halp and advise you. She’s the professional, the one with the experiamce. Also, there need to be a “profile” built of you, a case-study, if you like. Only by logging and monitoring your case, can treatment and adjustments be made to suit you. That nurse is the link I suppose, between you and the medical team. Contact her/him! :slight_smile:

yeah… i too was handed a pile of booklets and glossy brochures.

being a male, it was easy to thrown them in the bin, as they were full of photographs of females going about their active working and recreational lives. so much sales pitch, so much irrelevance. the decision was too vital to allow marketing strategy to sway the outcome.

i went to the online resource for the local health authority and found a list of all drugs available for RRMS. (and as i am canada, a list of how much they cost and how much is covered by the province.)

then it was a serious number of hours going on (presumably impartial) general health and MS specific websites (including this one), to read any and all reviews of drugs, with particular attention to any trials conducted.

then it was research into the individual trials; their numbers of participants, the duration of the trial and of course the outcomes.

all these results were poured into summaries and spreadsheets so i could see what was deemed most effective and which most risky. i even managed to get on a mailing list provided to GPs which assessed the adverse reactions to all such MS drugs.

after all of this data crunching, i went to see the neurologist and they asked, which one i wanted to go for. i told them “i dunno, which one do you like?” they replied “tecfidera” to which i agreed (coz i had already found it was way, way better than all of its rivals right now).

good luck!

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​Alethiajayne

Poppy makes a good point. Oops. I suspect the problem is that when you are newly diagnosed you don’t know what is ‘normal’ and don’t want to bother your MS nurse with something small that may not last. I should think that it’s a good idea to call your MS nurse, partly to make a connection with him/her and partly in case it’s more of a relapse than just a small thing. Ultimately the feeling may go away on its own, but even if it does, it’s no bad thing to have some record made of where you are right now.

And welcome to the wonderful world of the MS forum. You can always come here for help and advise, but sometimes we all get a bit distracted from your original thread!!

Sue

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Hey Guys,

Thank you all for your responses it has made me feel much better, to know and feel like im not the only one.

Its not a problem, we all do get distrascted :slight_smile: i enjoyed reading some of your threads but got abit worried as im on none of the drugs you mentioned.

They have put me on gabapentin (excuse the spelling) but thats just to numb the very bad back,head and neck pains.

Maybe they dont feel i need drugs at this time?

I did call my nurse in the end and she asked me if i have suffered from an infection, stress or temperature change, of which i have suffered with all 3 in the past 2 weeks, she thinks its likely the infection that has brought it on and suggested i go back to my GP to test if its gone away, ill find out on monday if its gone or not.

She mentioned the might need to bring me in if it has gone, what exactly does she mean?

Once again thank you all for your responses, i dont feel so bad now :slight_smile:

Alethia

I suspect the MS nurse is suggesting steroids for a relapse if your infection has definitely gone. You have to be careful with steroids and infections. I had them when I thought an infection was gone and it came roaring back and had to be aggressively treated with stronger antibiotics. That doesn’t mean avoid the steroids, just make sure you are free of infection.

I’m a bit surprised you’ve not been given a disease modifying drug Alethia, with RRMS, even if you have fairly few and not disabling symptoms, normally it’s offered. Have you been offered a DMD and decided against it right now or have your Neuro / MS nurse not suggested them to you? Generally a DMD is considered to be a good idea so that you stay as well and as relapse free as you possibly can. Do you have a neurologist who is an MS specialist? If not, I think you can ask to be referred to a specialist. That way, you’ll get the best chance of accessing the most useful treatments available.

As we’ve all said before, it’s tough enough getting your head round the diagnosis, let alone the drugs and treatments. Only when you’ve been ‘lucky’ enough to have had it a few years do you feel like you understand some of the options open to you. And even after many years, I’m still not an expert!!

Sue

My legs used to tingle, wasn’t a bad feeling, just felt like id done something, now I’m afraid just lumps of lead. I did think it was normal and never mentioned to anyone, then when first diagnosed I mentioned, and realised it wasn’t normal…

Hi Sue,

No they have not offered me any drugs, they said they don’t want to put me on any as its early stages and they don’t feel it necessary.

I do have a specialist but i haven’t seen them for a long time, in fact never seen him, he sent me to his nurse instead.

Im hoping to get some questions answered today if they call me back, im hoping that i don’t have to go into hospital, they did mention that they would not put me on steroids until it gets really bad as they are more harm than good

Any info you can share would be greatly appreciated

Thank you

Alethia

I shall try to be clear and concise; the above attitude is horse shit. Get on DMD; specifically i would recommend Tecfidera.

But truly, honestly, deeply, you need to demand, Demand, DEMAND some form of disease modifying drug. The next relapse you have may not be one you completely recover from.

Early stages is precisely when a DMD is necessary.

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completely agree Paulo.

I’m not prepared to let them play roulette with my brain. Have my next neuro appoint in a few weeks. He has offered me first line treatment. Stuff that, Lemtrada all the way for me. I am on a mission !

Up the revolution

Janet

Christ Paolo, get off the fence and say what you think, bor !!!

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Tingling after exercise is ‘normal’ in MS because your body temperature increases and it makes your damaged nerves jangle. Mine also buzz when I’m stressed.