MS Society UK | Forum

Newly diagnosed (December 2020) and don't know what to do with myself

I have recently had my first relapse since diagnoses and come to realise I haven’t actually accepted or began to accept the fact I have MS.

I mean I’ve been strong for myself and my partner who has tried her hardest to stay positive for me and made jokes or else I’d spend all day everyday in tears.

I guessy big issue is I have type one diabetes and epilepsy and I know what to expect with them how everything works. Whereas with MS I have been told there is an aspect of not knowing and I don’t like not knowing.

I just don’t know who to talk to or where to turn with my diagnoses or how I even begin to accept this fact.

Any tips or advice is much appreciated.

Many thanks

Lauren

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Welcome Laura

I am newly diagnosed too so totally get how you are feeling I have been in such a mess. I cant offer much advice as still learning myself but know you will get good responses on here. I posted along the lines of OMG help dont know what to do think etc and tbh still dont. They say everyones MS is different and it is but we have similar experiences so people can relate and help. All I can offer is a virtual hug and say hang in there, chin up keep going okay.

Good Luck and know you’ll get some answers xx take care x

Hi welcome (sadly) to the MS forum where no one truly wants to be.

I have been supporting a young women with her first relapse after her baby was born. we just talk about anything and everything, and never get too serious about things. she saw her neuro was taken to hospital and stablised. then left with a team of helpers from NHS.

I have encouraged her constantly to talk to her family and partner. TALKING can help. You see with MS everyone is different and deals with it differently. I think you have quite enough on your plate how did you cope for example with your diagnosis of diabetes and epilepsy?

I dont think its not knowing its not knowing how to deal with the aftermath of relapse perhaps. One minute your going along nicely, then blam your knocked off your feet. Your goal therefore is to get back up.

How to do that is the question?

reading lots of it, about relapse and recovery in MS. I am sure there is a lot of stuff out there even on MS society.

I am assuming you are being supported by you MS team which is most important. They will guide you through with therapies, diet and exercise and you may be assigned a physio.

You need your MS team to talk to. I am assuming if you say your relapsing you were told by one of them, so its up to them to guide your through it. I mean what DMD are you on?

Hey girl take some time for yourself if you want to cry do it, rage, scream. I dont think you need to be strong for yourself and your partner too. Like is said how do you deal with the other 2 you have been diagnosed with. you say you know what to expect from them do you? I always though diabetes could be unpredictable and so can epilepsy. with MS a relapse is a slight worsening of your symptoms and you need to halt it.

See i dont have the relapse remission type I am PPMS and its with me 2047. anyway talk to partner, talk to MS team, get help from them, ring the MS Society help line, 0300 500 8084. get active to understand your MS.

sorry i am waffling now. I am sure others will be along soon. BUT talk to someone in your team ok. xxx

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No sure if breaking any copyright laws but way back Dusty Springfield had a hit by this same title, aw right, crap joke, as the neurologist consultant told me back in 1997, just enjoy life to the full as much as you can, Brian

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That’s one hefty list of existing serious chronic conditions. That it’s bad luck you’ve got one to add to the list goes without saying, and I am very sorry that this has happened to you.

I take your point that MS feels is in a league of its own in terms of uncertainty. But the skills that life has forced you to develop as you learn to live with T1D and epilepsy will nevertheless stand you in good stead. Please don’t read that as me saynig ‘lucky you, having all those lovely skills to help you deal with MS!’ because I am actually very sorry indeed that you have had to develop those skills already: my point is only that this regrettable state of affairs is, at least, likely to be useful to you.

Can you remember how things were when you had those other unwelcome diagnoses? Maybe you were too young really to remember. But if you were dx more recently, you might remember the bumpy process of assimilating that new information. In my experience, it tends to be in a series of painful lurches rather than all at once, or in an even and gradual way. It’s been more as you describe it: a first relapse since dx happens, or something else happens, and there’s a series of oh shit moments as something vague and unacknowledged jolts (all-too-clearly) into focus. And then gradually the unpleasant revelations become rarer and life settles down into something that feels a bit more stable?
If that has been your experience before (and it has been mine) maybe it will be like that this time too. Your partner sounds great. It’s tough for you both, but having someone wonderful to love makes such a difference, doesn’t it?
Good luck.
Alison

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My MS nurse describes my situation as one, very rare and two, incredibly unique. She nor my neurologist have never met someone with all three conditions! I did joke could I get a refund on my brain but that didn’t go down well even though I thought it was hilarious!!

She’s been great and I couldn’t have gotten through the last 12 months without her but as hard as she tries she doesn’t really truly get it, if that makes any sense. I don’t know anyone else with T1D (my dad has it but friends/colleagues wise I mean) let alone someone with MS.

But you are all right I have a certain resilience to these kind of situations and perhaps I should use my team more for support and apply my skills from my diabetes especially to how I manage with my MS.

Thank you for your comment, I really appreciate it!

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With my T1D and epilepsy yes they can be uncertain and unpredictable especially with diabetes, for example if I sleep to much or not enough but I don’t remember life without diabetes and I was only 5/6 years old when diagnosed with epilepsy so I didn’t really understand but grew up knowing what it was, how I look after them both etc. I have been seizure free for a year and according to my diabetic nurse for everything that’s going on including the course of steroids I have impeccable control of my diabetes. She was shocked I didn’t go in to diabetic ketoacidosis with how high my blood glucose ran throughout the week on them.

This diagnoses has some how knocked me off my feet and I really don’t know what to do. I don’t like to annoy or pester people so I rarely seek support from my MS team and it’s even effecting my work life because of how stressed and worried I am.

I guess i should perhaps try talking to someone that’s not directly involved if that make any sense. Don’t get me wrong my partner has been fantastic, the last 6 months have been I’m sure just as hard for her as it has been for me but I feel like she doesn’t really get it. She tries to stay positive and shares loads of positive things in general and MS with me all the time but I feel like she hasn’t really grasped what goes through my head.

MS doesn’t run in my family so it was shocking for me especially as they were looking for something else completely.

But thank you for comment, I really appreciate it!

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This is the first time that I think someone may understand how I’m feeling, too…I was also diagnosed in 2020 (January) and also have type 1 diabetes! I also have hypothyroidism so often joke that I’ve been blessed with the autoimmune trifecta- this is also never received very well! Haha.

I also find myself basically being completely consumed by the MS diagnosis and am trying my best to process it all but am really struggling with this one.

Like you, I was diagnosed with diabetes very young and so don’t know any different other than life with diabetes, so have never really had to process it or readjust massively.

I think what I’m finding difficult with MS I’d that there’s nothing I can really do to control it day to day. With diabetes I can adjust and amend and control everything on a daily basis and although things can still be hella unpredictable sometimes, there’s still that element of control there.

Not sure if you feel the same? Just not too sure how I’m meant to deal with this one!

I was wondering if there were many other type 1 diabetics out there. It’s utter rubbish that the MS diagnosis has come along but I’m happy to listen and share if you ever need it (aware this is probably quite weird coming from a total stranger but I know that something I’m struggling with is balancing more than 1 condition and not many people fully understanding that) :slight_smile:

X

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Hi AnnaRice and Lauren993,

I just posted my first message looking for type 1 diabetics who also have RRMS. I’m trying to understand how your consultants help you - do they communicate or do you find yourself filling in the gaps?

I just had my 2nd baby and the conflicting/ lack of information I got about medication, labour, breastfeeding, etc. was very confusing. Unfortunately it resulted in a severe low blood sugar with prolonged seizures that saw me in a medically induced coma for a week away from my 4-week old baby. I’m desperate to know how I ended up there - my neurologist is now prescribing epilepsy medication but I think it was the consequence of sustained breastfeeding.

I’m not expecting anyone to answer that question for me but it’s an example of needing joined up thinking around T1 diabetes and MS.

If anyone has that solved, I’d love to hear more about it.

Feel free to PM me if you wish? I have no idea how to use this forum yet. Thanks :slightly_smiling_face: