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Newly been diagnosed with MS

Hello all I am new on this site as I’ve just found out on the 28th of January that I have MS. I have been having episodes of my arms legs and face tingling this is how it started off and realised that something wasn’t right. It all started in 2018 when I started feeling tingling on my left side of my face and thought it was maybe nothing that the cold got to me so then it progressed to that it started going numb following with my lip, top pallet of my mouth, gums and also my tongue, I went to the hospital thinking it could be something like a stroke as there have been strokes within my family that it has happened but to be told it wasn’t they couldn’t give me an MRI then which they should have, they said we’re are unsure what it could be but if it does happen again please contact your gp and they will investigate it further and book you for an MRI. It took a while for my the feeling of my face to return back to normal and I was fine afterwards. Then in feb 2020 it happened again but no numbing this time just the constant tingling which was making me feeling so uncomfortable and on edge so I went back to the drs again and they put me through for an MRI which took place in July 2020 during this terrible pandemic. I was then contacted by the hospital and confirmed that they have found lesions in my brain which is the start of MS. I am absolutely heart broken and feel so lost and alone I do have my family and husband for support but it doesn’t feel the same as they don’t know how I am feeling and what i am going through. I am constantly crying, I have a 4 year old little girl that I love dearly and that it breaks my heart to know she doesn’t understand that some days mummy doesn’t feel well or she feels very down and weak, I’m in shock I can’t get my head around it. Just need someone to talk to.

Hi Angie

you have had this diagnosis for 3 days? 3 days?

Be kind to your self, weep and rail against it, get it all out of your system.

I did not and actually was quite happy… until I crashed back down to earth.

Mostly my life turned out as a series of ups and downs which is pretty normal really.

The thing about MS is that just when you think you have figured it out, it will prove you wrong.

So you need to develop coping strategies, there’s no rush just give it some thought.

I had good coping strategies until covid came along and meeting friends for a coffee was out of the question.

Your 4 year old daughter will be fine. Children are remarkably resilient. You can have a nap when she does (important).

Share books with her and have loads of cuddles. Cuddles are the best therapy.

Praise her for being kind when she shows understanding and kindness.

Get your family onside with the praising.

You should talk to your GP if you continue to feel low, There are lots of options. My GP gave me a mild anti depressant (Citalopram) which took the edge of it without turning me into a zombie.

That weird face sensation was one of my first symptoms which I had at 16 yrs of age and was Bell’s Palsy. I had it again at 52.

(I was diagnosed with RRMS in 2008, just before my 50th birthday).

Now bite the bullet and make an appointment to talk to your GP.

Keep a diary of how you are feeling and any new symptoms.

Your husband and family will be feeling scared too and worried.

Think about joining your local branch of the MS Society (although you won’t be able to meet them but it is wonderful to be able to talk about it all to people who understand).

I hope you are feeling stronger.

You will be stronger and you will get through this.

Sending huge waves of love through the ether

Carole x

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Hello Angie

Carole has given you some excellent advice. You really shouldn’t expect to come to terms with a diagnosis of MS in just a few days. Give yourself (and your family) time and space to adjust to it. In the meantime, give yourself the freedom to shout, whinge, complain at the rotten luck that’s brought you here. Many of us take great delight in swearing at MS (out of 4 year olds earshot of course!) and damnlng it to hell!

It looks to me as if you have the relapsing remitting variant of MS. This is the most common: about 85% of people diagnosed have RRMS. It’s characterised by having relapses, aka attacks or flares of symptoms followed by remission, this might be partial or complete. The reason I think it’s RRMS rather than a progressive type (where there are no relapses per se, but just ongoing symptoms) is that you’ve apparently had several relapses from which you had remission.

The good thing about having RRMS (not that I’m suggesting any variant is good, just somewhat hopeful) is that there are now many drugs available which are designed to reduce the number and severity of relapses. When you feel a bit stronger and have the time to spare, have a look at https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid This webpage details all the currently available drugs.

You should also soon be given the contact details of an MS nurse. Your nurse should prove invaluable as a source of information, someone to discuss all that you’re feeling as a result of the diagnosis, how to cope with symptoms and to discuss disease modifying drugs. A good MS nurse is worth his or her weight in chocolate. They can give you excellent support and advice. If you aren’t contacted by a nurse within the next few weeks, try phoning your neurologists secretary and ask for the contact details.

Meanwhile, look after yourself, read Caroles advice again and keep coming here to talk to us, we’ll help as much as we can. Try not to Google MS and its symptoms. Dr Google is a rotten doctor who will scare you, lead you astray and probably not help. Instead, have a look at the information on this site, see the tab marked ‘About MS’ or look at the MS Trust website, both will give you accurate and up to date information.

Best of luck

Sue

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Hello Carole,

Thank you so much for your response you don’t know how much it means to me that you have read what i am currently going through at the moment and its helped me reading your support you have given me during this terrible time. Everything you have said is right i should be stronger and i can do this its just its really knocked me sideways that’s all and i am still in shock from it. The drs from the hospital that spoke to me didn’t tell me much about my MS just that i am not getting them as frequent and also checking the MRI scan and the lesions, he said f i do get a relapse i should contact him to start taking medication, i do believe i had one yesterday and today but not as bad as what i had in 2018 but its just all so worrying. My family is begin supportive and just telling me that everything will be ok but im just very scared. I havent even gone to work as i am scared during this pandemic and my family is worried for me also. Thank you for advicing me for cuddles from my little girl shes always cuddling me and it really makes me stronger and i will insure that i will fight this for myself and for her as she means the world to me.

I am not too sure but i think i may have RRMS like what you have but the dr didn’t go into depth which he should have but all he just said was to contact him if there was any change.

I really do hope your ok and could i ask what medication was given to you to help you with your MS hope you dont mind me asking.

Thank you again and take care and speak soon

Angela x

Hello Sue,

Thank you so much for your response it really means alot. Definitely it will take some time to adjust just need to not beat myself about it and i do have a bit of a moan and i cry quiet a bit at night which helps. Could i ask i didn’t get a chance to ask Carole but thought ill ask you can mood swings be a part of MS and if so what could i do to control myself as i have a bit of a temper as which i know it doesn’t help as i find when i do get a bit emotional i can feel myself getting worked up and my body starts to tingle just wondering what i could do as i want to change myself a bit to help myself with the ms?

If i do have the RRMS what does that mean, i have been doing some research and i still don’t understand it much i will read up on it more. Since i found out that i have MS i have been doing and more research to familiarise myself with it more and try and understand it more.

Thank you for the information about the nurse i will keep and eye out if anyone contacts me if not i will contact the department and get the details as every little helps to help me get through this.

I know my mother does tell me not to google too much stuff as its not accurate and it will make me think what if, bless my mum she doesn’t want me to stress out more then i am already feeling.

Thank you so much for your advice and take care of yourself and speak soon

Angela x

Hello again Angie

I can help you with some links to helpful webpages. Your mother is right, don’t randomly Google MS, it could lead you to incorrect information, worry you silly and at best be unhelpful.

First, this is a page about symptoms: https://mstrust.org.uk/about-ms/ms-symptoms/signs-and-symptoms Take note from the initial sentence that nobody gets all the symptoms, and the list itself might not be complete, some people might get symptoms that are not mentioned. Also see https://www.mssociety.org.uk/search There are many pages there on different aspects of symptoms. I imagine mood swings can be symptoms, then again in the early days of the diagnosis, you can expect to having ups and downs.

You asked Carole about relapsing remitting MS, here is the page from the MS Trust about the types of MS: https://mstrust.org.uk/about-ms/what-ms/types-ms there is a link in the page giving details about RRMS. Again, you can do a search on this site about relapsing remitting MS. Relapses aren’t going to come and go very quickly. It’s usual for a relapse to take weeks at a minimum if not months to remit.

Don’t be too much in a hurry to learn everything there is to know about MS. I’ve had it for 24 years, so have had plenty of time to understand the dammed disease. Carole hasn’t had it as long, but I know that she’s had it quite a long time. We’ve done our panicking and crying about it years ago. Give yourself time to get over it.

Sue

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emotional lability causes mood swings.

it is often referred to as emotional incontinence.

In my case I went from manic bouts of laughing to crying my eyes out 10 minutes later.

It is caused by the pseudobulbar effect which stems from the frontal cortex.

Calm yourself by deep breathing.

ask your GP for a mild anti depressant such as citalopram.

Breathworks Mindfulness Meditation is very helpful for helping you to get into the habit of deep breathing.

Please believe me, this is a perfectly normal thing to happen when you are still in shock of your diagnosis and your poor brain hasn’t had time to realise that It isn’t as much in charge as it should be/thinks it is.

Take care, calm yourself right down, speak to your GP.

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Hello sue,

Thank you for your reply I will look into the links that you have sent me. I am trying to take it easy each day but I just get stages that I’m ok and then I’m down again I suppose it part of the process and I have to deal with it. I really do appreciate everyone giving me the support.

Thanks angela x

Hello Carole,

Thank you for your advice I appreciate it. I am going to do some sort of meditation to help me keep calm as I do have a few outbursts. I will try to get through to my gp as it’s difficult to at the moment they never seem to pick up the phone but I’ll keep trying so I can talk to them.

Take care also

angela x

hope you are ok Angie,

It is a Bumhole****(swear words).

Keep up the cuddles! x

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Hi Angie2021

I was diagnosed end of July 2020 after CT scan then MRI and finally lumber puncture. I am the poster child for you don’t know what is round the next corner.

I started with double vision, tremor in right arm/hand, balance becoming poor and fatigue.

I am waiting to start DMD’s which will be beginning next month all being well.

We are all different how it effects you is different to how it effects me.

This is a club that no one wants to be a member of yet here we are so you have to ignore it and get on with it as normal.

I’m a grandad with two two grandsons (5 and 2and half) with a girl due any day. the boys know that Popsy’s

not well but they just carry on as usual.

Don’t let the MS rule you, YOU RULE THE MS.

Regards Carl

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Hello Carole,

Thanks for your message sorry for the late reply. I ain’t good this week been feeling tingling on my left side and i feel so weak and emotional also i honestly hate feeling this. I may need to contact the dr whom is looking after me to inform him whats been going on.

Hope your ok sending cuddles your way stay safe

Angela xx

Hello Carl,

Thank you for your message i really appriciate it. Lack of balance and also fatigue is something that affects me and also tingling is what i currently been having a few days now which is affecting my mood.

I am trying my best for the MS not to rule me, some days i feel great and other days i feel crap like i have been feeling the past few days and i hate feeling like this as it messes with my mood swings and i just feel like begin alone.

Has your grandaughter been born yet hope everything is well with your family

Make sure you take care and keep safe

Regard Angela

Hello all hope were all well and keeping safe,

I have been invited to get the vaccine tomorrow and feeling a bit nervous for it. Has anyone else had it done?

Angela xx

Hi Angie

Know little granddaughter yet but any day now. It really is any day now.

Thanks for the reply. Yes I’ve had the vaccine it’s know great shakes (well it wasn’t for me) second jab in about 11 weeks.

I’m glad you don’t let the MS rule you.

I’ve had my letter telling me when my next MRI scan before starting my DMD’s (Tecfidera).

regards Carl

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Hi Angie, like you I am newly diagnosed (13/1/21) and started with tingling and itchiness in my left shoulder, arm and hand in August last year. I am 54 next week and the only other symptom I can recall with hindsight is a temporary sight loss in my right eye which fully recovered within 3-4 days. That was 25 years ago! Thankfully the itchiness has gone and the tingling has eased off in my left arm but is still in my left hand palm and fingers. I have since gone on to develop tingling in the soles of my feet.

The GP and hospital have been really good and after MRI and CT scans, I have been told I have RRMS. I haven’t been put on any medication. I am told that it is mild and so I hope it will be at least another 25 years before I get any more symptoms. I am generally fit and well and so I am trying to ignore the diagnosis and just carry on as normal. Part of me thinks if I have had it undiagnosed for so long I need to hope that will continue.

I don’t know if I’m in denial at the moment. I just feel emotionally numb. I haven’t cried and don’t feel like I can. I am lucky that my husband and daughters (aged 19 and 24) are old enough to understand and help if I need it but I find I am constantly waiting for the next symptom to start. I am a positive person but I understand how you are feeling. I haven’t posted on here until now but I felt I wanted to reach out to you after reading your post. There is a community out there that can offer support and advice. After getting the diagnosis and speaking with the neurologist, then speaking with the MS nurse I feel a bit in limbo. I am next due to speak to the neurolgist in 6 months and the MS 2 months after that so this forum is a real help.

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Hi Oscar and Angie

I was diagnosed in October 2019. Mine started with double vision and balance issues and dizziness. I went to the Dr who sent me to A&E . Due to my family history I thought it was a stroke or heart attack (I am 44), I hadn’t even heard of MS, so it was a massive shock when they told me during routine rounds at the hospital…all on my own…behind a curtain. I cried and cried and had my first panic attack!

BUT after a relapse soon after diagnosis - Numb lips tongue and face on right side - I started Plegridy (Awful stuff) and now Aubagio (Wonderful stuff) and, aside from residual light headedness and fatigue…I feel better than ever.

Just had an MRI in December and am waiting the results, but expect them to be good.

I know everyone is different, but it is fantastic to know what it is as I thought I was going mad! And its great to be on the drugs as I firmly believe they have helped me.

I can’t say what will happen in the future and I have the occasional panic, but in the main, life’s gone back to normal and my plans are the same as ever.

Please know that time will help you process it, and you won’t always feel this terrified.

Much love to you both x

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Thanks Dexter. Hope all is going ok.

One thing I am unclear about it medication. My consultant hasn’t put me on any medication after my diagnosis. Is this typical? I know everyone is different but do most people get prescribed something. I am worried that I am not being given anything to prevent a relapse. Any views on this would be gratefully received.

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Hello Carl,

Hope your well and keeping safe. Oh ok your granddaughter will make a show soon . I had my vaccine on the 16th and it was ok i did have pain on my arm for 2 days and i am ok now.

I have had a few tingling over my body but its not so bad im trying my best to deal with it th best i can.

I see hopefully wont be too long for your next MRI and you can start medication. Have you had any relapse or any tingling?

Regards

Angela

Hi Oscar. I don’t think they were going to give me anything either. Sometimes they watch and wait to make sure it wasn’t a clinically isolated attack. I had another new relapse within a month so was offered something to help manage them. I am on Aubagio and just found out today that I have no new lesions on my mri so I am so happy. I think it’s worth talking to the nurse about but you might hav3 to try a few to see what works and the side affects can be worse than the actual ms IF you have it mildly.

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