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Newly diagnosed and dont know what to do

Hi , i am newly diagnosed but have suffered for years . I am going through a relapse and am getting numbness from feet to hips and dont know what to do ? Should i be asking for some tablets to help me through at moment as awaiting to see MS nurse and to sort medication but she is ill and not available . Would appreciate anyones advice as this is awful and i am a little worried

Hi Kelly

Welcome to the club and to this forum. It’s understandable you’re worried - it’s all new, your body is experiencing new & unsettling things, and you’ve not got experience yet for how the system works, in terms of getting the right help.

If I were you, I’d get in touch with your MS team/neurology department, and say you have a relapse and need an appointment. If your MS nurse, are there other MS nurses available? Or do you have the number of your neurologist’s secretary (if you have any letters from your neuro, it might be on there)? The standard treatment for a relapse is steroids - either pills or a daily IV drip. which help speed up recovery (although the drip is more inconvenient, as you need to go to hospital each day, I prefer it to pills as the side effects are better).

When you see a nurse/neuro, as well as asking for steroids, ask them about starting DMDs (disease modifying drugs), which help slow down the rate of relapses.

And, of course, come on here as much as you need to. Ask any questions you need to, there should always be someone to help

Dan

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Thanks for reply . I have done all the things you suggested but still no help yet but thank you for your advice :relaxed:

Hi Kelly When I was diagnosed, my Neurologist wrote to my GP and told him the steroids to prescribe if I had a relapse. Might be worth checking with your GP is you can’t get hold of the MS team. Best wishes to you.

H Kelly

Your GP can prescribe the steroids for you. They just need to do a blood and urine test to make sure you don’t have any underlying infections that need treating first. When you get the steroids also make sure they give you some stomach calming tablets too. The steroids taste disgusting so make sure you swallow them with lots of water and have mints on standby :slight_smile: . Also, make sure you keep well hydrated whilst on them and a few days after. The side effects when you finish them are not nice - I ache all over on my upper body and don’t sleep well but it only lasts a couple of days and the fact it speeds up your recovery makes it worth it. Once you have had them and know what to expect it makes any future courses a lot easier.

Hope you get put on some DMDs soon.

Take care and remember you are not alone. There will always be people on here who can help you.

Jo

Hi Jo, thank you so much for your reply I had been on three days of steroid IV and I’ve now lost use of my bowels and bladder but hopefully after 10 days of this misery I will recover and things will be better. This site is fantastic for help for people like me and I appreciate everyone’s replies and hope that one day I can help others and help others to fight this misery we all going through. Xxxxx

Thank you so much for your reply after 10 days I’ve managed to get 3 days of IV steroids but thank you for that advice as if I couldn’t have sorted it through the Ms team I would have needed to know that so thank you Kel x

Hi Kelly

glad you managed to get help, I was diagnosed last Nov with same type as you. Has been quite a challenging time to try and get my head round this but like you I think I had had it for few years at least prior to diagnosis. This online community is great and you really don’t feel alone here. Plus MS trust website is great too, but they don’t have online community apart from through Facebook but don’t feel that’s an option to me as not told many people. So please don’t hesitate to type on here someone will always respond, we will get through this together.

Hi Kelly, I had exactly the same symptoms as you and I too was diagnosed in November…I’d had no other symptoms prior to this so I was completely shocked when told I had MS I had 3 days of steroids that didn’t work initially, I think I expected a miracle cure, but time and resting eventually did. Take care xx

Hi jem , how long did it take till recovered ? I have been suffering for 10 years and finally got the answers to it all with the MS Diagnosis but still scared i will not get the feeling back from stomache down :frowning: Xxxxx

Hi jem , how long did it take till recovered ? I have been suffering for 10 years and finally got the answers to it all with the MS Diagnosis but still scared i will not get the feeling back from stomache down :frowning: Xxxxx

Hi Kellyb, It was a slow process and can’t remember exactly how long it took but I started to get the feeling come back in my feet and in my waist and was just left with my knees that still aren’t right. I’m sorry you have suffered for 10 years and only just had answers. My GP told me it would be a slow process…and it was. Rest up and take each day as it comes. I’m back at work now, although I reduced my hours and just work mornings now xx

Hi jem , thanks for replying and sorry that it didnt completly recover fingers crossed i get back some feeling . Kel xxxx

hi kelly i’m joining this thread late but just want to say that there will be a bowel and bladder clinic in your area. they are brilliant and are very keen to lessen the embarrassment. i was shown how to self catheterise which has been a godsend. they can also discuss medications for bladder problems. i tried 3 which made me very thirsty. kind of gagging for a pint but the bladder nurse really warned me off any stimulants (alcohol, coffee). i still drink more coffee than i should but have really cut back my alcohol intake (now an official miseryguts!) google Bowel and Bladder clinic and you’ll see where it is. good luck xx

KellyB, I really hope you get your feeling back soon. I know we are all different and have different issues but I’ve got my fingers crossed for you xxx

Hi I was diagnosed on Saturday, by the neurologist, following an MRI and Lumbar Puncture. What happens next? i have been referred to a consultant(?) nurse (?). All a bit of a blur from appointment as seems quite surreal. I am fit and healthy so am quite hopeful although looking to appointment with some trepidation

Hi Richard

i was diagnosed with RRMS last Nov, and I had exactly same feelings as you. When I saw my neurologist when I got diagnosis ( which was a massive shock) she referred me to a MS nurse who I saw in January for first time. She gave me lots of info which totally blew my mind! I am fit and healthy like you and hope it stays that way. Depending if you have any symptoms or relapses you won’t see Neurologist very often. I saw mine in March last not due review with her again till next March. I think do bit reading but from reliable sources like this website or MS trust and give yourself time to process it. The worst thing I find is the unpredictability of it all. You have always got a friend on here if you want a chat we are all in this together. Don’t overload yourself with info just little bits to begin with as I was bit overwhelmed with it all still am at times. Take care

Thanks Southern Softie, that’s really appreciated. I had my first ‘episode’ 11 years ago and blurred vision in one eye starting in April. Other than that i am fit and healthy, being a keen cyclist. i guess the frustration that i have is the diagnosis and then the wait for my appointment when i have so many questions. i have read what i can, but am keen to find out if there are any changes that i can make to my lifestyle that will help me for the long term. I’m sure that i’m not the first to feel like this and won’t be the last but am keen to do what i can