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A Relapse Question warning confused male

Okay my brain is now messed up as im confused (i can hear some of you muttering , your a man what do you expect lol ) okay i supposedlly hit this wall 4 weeks ago okay i get that but since then ive been left with from the knee down on both legs feeling kinda numb weak and tingling Is this just a symptom of hitting the wall ? now several weeks on im left with numb hands cant play my guitar properly ( be warned i played it bad in the 1st place ) and lasterly last week as some of you know my face neck and throat and tongue etc and all inbetween have gone tingly numb swallowing pills has become difficult where as before i swallowed them without water or coffee in some instances anyhoos , if what i had was hitting a wall whats a relapse ? and these symptoms now are these symptoms or what i am going to be left with as part of the MS , unfortunately my MS Nurse is the head of the nursing team down here so if i peeved her too much im affraid id be left hung out to dry but in all honesty thats the way i feel anyway , but her response was and i quote “A relapse is a set off symptoms with a left changing event” i.e. ON and i was left blind in my left eye so i take it my symptoms have to cause a life changing eevent before its classed as a Relapse ? as i did what i am supposed to and emailed her my new symptoms that lasted more than 24hrs as its been getting worse ever since my hit the wall

Told ya i was confused.com my mind is exploding with when what and if’s , i have an appointment with her on the 1st and my gp said it would be best to wait to see her with regards to my throat etc but im thinking that would be 5 weeks since hitting the wall so in theory that would be too late for steroids anyways ? if someone could explain when i supposed to realise im having a relapse if what i am getting is symptoms id much appreciate it , sorry if ive baffled you and made your heads spin but im in a world of misunderstandings and confuddled

Many thanks sheep

hi sheep

6 years after diagnosis and i still don’t know what exactly constitutes a relapse.

i know i definitely had one in february this year but ms nurse just told me to take more gabapentin.

good luck with your appointment.

you fellow confuddled being

carole x

sean

i read most of your posts with interest…i understand ur confusion.

i hope that u have read enough of mine to get some idea of why i say the things i do!

i am fairly disabled now-carers in etc. i will tell u in greater detail if u wish but only to try and help u understand why i think its important to keep your mind stong no matter how your body is failing you.

i believe that no-one can answer ur question because nobody really knows! even on here we and our neuros/ms nurses cant agree! discussion is good of course it is but the reality is sometimes there is no answer!

so how does this help YOU? i found when i stopped trying to find all the answers to the unanswerable questions and accept that it was happening and there was little i could do to stop it, it made helped me come to terms with the fact that i had a progressive incurable disease/illness. (i know that sounds blunt/harsh but am just tying to be honest here!)

i understand u r recently diagnosed and u r right to ask many questions but its just as important to keep ur mind strong which takes training. look up meditation if u r interested…

take care and u will find your way through this, of that i am sure, ellie

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I think that most people set the bar on what constitutes a relapse a little lower than ‘it has to be a life-changer to count.’ But like others who have replied, I never have sorted out what is a relapse and what isn’t, or when does a non-stop series of them count as a single one or several, so there you go. 15 years in, and still none the wiser.

I hope you feel better soon.

Alison

I think its really important to have a ms team who are the same wave lenght as you, from reading on ms I think a relapse is any new symptom that lasts more than 24 hrs or ols symptoms that come again with no infection present. I think its important to get these documented as a relapse, it means you have more lesions therefore you might qualify for different tier dmds and find one which slows things down. I read the barts blog and although I dont live anywhere near london I travel to see a consultant there who I feel treats ms in a way im happy with. My ms nurse is in my local area but I pass on information from my london consultantand if I relapse he will see me and document and treat accordingly. If your not happy gp can refer you to another area but you are still intitled to use your local services. Zoe

Thanks folks i awoke this morning to sharp pains from me neck to my middle back so as i type im sat here with me collar on trying not too look left or right so an easy day on the cards many thanks for all your replies much appreciated and elle i reckon your onto something i reckon im spending so much time trying to figure whats going on instead of accepting , i do worry as im battling the PTSD everyday wether i got it in me to accept and find my way through it , you folks are a true inspiration from the topics i read and the furture worries me wether i too can be as upbeat and strong as whats needed as i fell into a black hole for quite a few years dont think i can go back there.

Im guessing and fast realising im not going to understand it as like you say its so much into the unknown and ive always been a black & white chap guessing its a learning curve i will learn as i go along , it would of helped if my ms nurse responded to my concerns it almost makes me want to tell her where to go and cope on my own and with the help of here maybe thats a way forward for me, i cant meditate elle as the minute i relax or try to empty my mind the bad memories return im constantly having to keep my thoughts in check.

Many thanks elle yep i read yours too and thankyou for your kind words and blunt is good for me and i find inspiration from your posts yep Jen yes to all of the questions im guessing due to us being DX at approximatelly the same time we are going through the same thought processes and challenges and what ifs and but’s , but i reckon we will get there Jen the crawling / creeping is bang on im looking forward as in a few weeks it will hopefully lessen or i will get used to it 1 of the 2 lol

Thanks Carole and Alison yep confuddled is a great word and though i find comfort others feel the same i feel saddened that any of us should feel this way but also saddened by the fact others have it worse and when i get to that light at the end of the tunnel perhaps i will be a stronger and better person for it and maybe put it too good use and try to help others in some way.

Off topic how can they justify spending 20mil on Calais to help the french with their border problems and not spend 1 or 200 pounds on medication for some of the folks on this forum get the medication they require is beyond me anyhoos many thanks feeling alot brighter today and elle your bang on so if anyone is reading this as a new sufferer they are wise words from elle all the best and have a great day folks & ty and sorry for bending your ears its just soo confusing for new folks

respect sean

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