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New diagnosis, feeling lost

i was recently diagnosed with relapsing MS. I have had numbness and pins and needles invite kegs, migraine, extreme fatigue. Recent MRI showed inflammation in nerve fibres in brain. Consultant has put me 500mg daily of metrodine steroids to try and combat current symptoms. To say receiving the news I have this is hard, I was not expecting this outcome. I have no idea on how often I may have an episode or how long it will last and what new symptoms I may experience. Any advice appreciated, feeling lost at the moment, thanks

Hi Jackiel,

im afraid I don’t have anything too useful to add - as still very new to this (and formally still only CIS - more about where I am in this process in the “in shock” thread) but can empathise with feeling lost and finding the news hard. My defence mechanism has been to google the life out of MS in a vain attempt to understand and control. Obviously that’s not going to happen (although research into drugs and lifestyle changes that can help has made me feel there is a way through this) - so I’m lurking on MS boards instead. I had 5 days of medrol for tingling toes and, 8 days later, they have worked (with no side effects). Having the physical symptoms abate gives you chance to process the news - so hopefully you’ll get relief soon. Do you have a follow up appointment booked with the neuro to discuss treatment? Have you been put in contact with an MS nurse? They may be able to help. K

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Hi katy

thanks for the reply. I have an appt with neuro in four weeks to discuss any questions and any further treatment I might need.

i only had diagnosis formally last week so it’s all quite raw for me and hard to take in. As if I haven’t been through enough already with a diagnosis of POF when I was 29 which has prevented me from having children.

ive started making notes for the consultant when I go back!

Hello,

also new to this just diagnosed game, 10 days ago, with relapsing remitting ms.

Since then I think Iv had a mix of both of your emotions, I hate not having control and that is the worst thing about this disease! I am only 24 and probably struggling with the future aspect of things- getting married and having children are so important to me and it’s horrible knowing these things might be that bit more difficult.

Currently battling the NHS to get appointments with ms nurse and ms specialist in a timely manner, 6 week wait for both and can’t see specialist before nurse- just want to get treatment plan sorted (also hoping lemetrada due to my age/amount of relapses etc) before summer so I can get used to this thing!

The thing I find hardest is conveying my fear of the Unknown…does that sound silly?

Hi, no it doesn’t sound silly at all. The emotions I had when they told me it was MS, was such a shock, my GP thought the numbness and tingling was s sign of my back problem and that it could’ve been sciatica!! How wrong could they be eh!

i had read that MS is more commonly diagnosed in women age 20-30, bless you, you are so young, I am 46. I was diagnosed with premature ovarian failure at the age of 29 and was never able to have children.

it sounds like you are getting a treatment plan sorted, I hope to do the same when I go back for my follow up in three weeks. It’s the not knowing what to expect that frustrates me, how frequently I may have relapses, how it will affect my life, it’s so scary! Xx

I think notes for the neuro is a good idea. I’ve started a diary for the first time since I was 12 in an attempt to try and keep track of my thoughts and questions. Important to be prepared in these sessions as there is so much to take in, the discussion can be upsetting and it looks as though there will be long periods between the appointments (so need to seize the opportunities to question the specialists when they are available).

Very sorry to hear about your prior POF diagnosis

x

Hi thanks for the comments. I really want to exercise but not sure if its going to make the symptoms worse and Ill be back to square one! I think if the steroids help with the current problems and my legs start functioning better, I can get back on it but a gentle start. We have some lovely countryside where we are, so it would be nice to go for a walk without my leg giving way.

Is there anything you find you cant do as well when you have an episode?

I’ve been following a forum on Facebook but didn’t want to post on there as everyone I have on my friends list would see it and I am not ready to share it with people who are more acquaintances than real friends. There are some people with terrible symptoms when they have a relapse and its really quite scary to read about as I wonder if this is what I have to come in the future.

Everyone has been so supportive which is really great, I just want to feel normal again…will that ever happen? I have a lovely holiday to look forward to at the end of May in Italy, just hope I feel better fo

I am glad I have found this forum, it is helping! I wish you well too.

Hi Jackiel,

Speaking from a position of zero real exeriance, but from what I have read / heard from my neuros I think it is case of “one size fits one” re. what people can/cant do in a relapse - due to MS symptoms being like snowflakes (and high individualised for different people).

Im into trekking (and exercise generally) so this was something I asked both neuros (and my GP) about. They were of the consistent view that if I feel comfortable with exercise, I should just crack on. The advice I was given is that exercise wont make the flare ups themselves worse (from a nerve damage perspective) or increase the likelihood of a further relapse but may make aggravate some clinical symptoms - so there is a need to play it by ear depending on the symptoms and how uncomfortable the symptoms make you. If one of the clinical symptoms is fatigue, this could also be aggregated so, until you know what you are dealing with, there is a need for moderation. The other side of the coin is the positive effects exercise may have in the battle against MS - (i) keep you mobile and limber to help recovery against relapses; (ii) help manage weight against steroids / times of less ability; (iii) general fitness and well being more important now than ever (help defend against anything else!); (iv) general sense of mental wellbeing and way of combating fatigue; and (v) possible neuroprotective effects of exercise (recent report in the news section) on MS Trust re. stimulation of BDNF (which may help repair nerve damage)

I’ve been very lucky as I have only had very minor clinical symptoms to date and have been able to walk every weekend on my pins and needles (including a 22 mile walk). Whilst I definitely noticed the buzzing more after exercise (and at times the buzzing felt like small pebbles on the sole of my foot) it didn’t make it materially worse (and I’m basically back to normal now post steroids). Next week I’m walking the Causeway way in Northern Ireland over a couple of days - so fingers crossed.

Holiday in Italy sounds fab - think of all the lovely Vit D you’ll get!