Last reply 3 weeks ago
Diagnosed a week ago

Hi everyone,
Hope you are in the best of possible health..

I was diagnosed a week ago. The consultant just told me I have MS. Silly me went alone thinking it was like the last appointment where she just told me more tests will be done and it probably won’t be MS.. Any way, my mind went blank. I remember asking was will I be ok being a single mum to a 10 year old and 7 year old? She didn’t respond and went to fetch an MS info pack. All I remember her saying is that there were two lesions on my brain and two on my spinal cord..
I didn’t even ask how far my MS has gone or what stage I’m at? So I left clueless. She did say they will send me a letter regarding a meeting with the MS nurse. Haven’t received anything yet.

I feel I am having a relapse the past few days. Symptoms ranging from; heavy numbness/burning in both legs (this feeling is always there, I have just become immune to it) but has felt worse these few days, my back is very painful, been constipated with heavy bleeding once, when eating food feels like it’s stuck in my throat, itchy legs and itchy soles of my feet and heavy numbness before having diarrhoea. Once relieved the numbness is reduced? At times my head feels so heavy to hold up..

I have no clue what types of medication can help? But I do know I need to fix up on my diet, I have a sweet tooth which doesn’t help.. I drive everywhere which isn’t healthy. I’m planning on joining a gym to tone up and keep active..

Any advice, feedback, opinions or own stories are welcome 😊

Wish you all the best!
Newbie:)

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rogersouthall
3 weeks ago

aamena, firstly, I am so sorry for the way you have been treated and find it hard to see, without the correct test, that you can be diagnosed. I understand your concerns and feel for you. http://www.wholesorts.com is my monthly blog, it starts from when first diagnosed and all that had to be gone through, hopefully you, or someone close to you, can help, but my contact details are there and call anytime, good luck
http://www.wholesorts.com


Anonymous
3 weeks ago

Aww bless you Roger!
Thank you 😊
Regarding the diagnosis, It was made on a lumber puncture, two MRI’s and a CT scan..
My mind is very foggy, don’t know if I’m coming or going?
Luckily I have a week of from work as I work full time in a school..

Thank you
Aamena


dramaqueen
3 weeks ago

Scary place to be but try not to over think. MS is different for everybody. With 2 young children you will hopefully carry on as normal this responsibility will keep you from dwelling what might not happen. Stress is not good for MS it is very draining.
Its great your scheduled to see the nurse. Nowadays there are many meds that can control symptoms or supposedly slow down progression. Being older we never had much medical input back then. But you’ve found his site were all of us understand your fears . A problem shared is a problem halved. I have sent a friend request speak any time.


Anonymous
3 weeks ago

Awww I love your name ‘dramaqueen’ 😝😍
Thank you! Will definitely accept..
still getting use to this site.. xx


stumbler
3 weeks ago

@aamena_kola , now is the time to sit down and breath deeply and slowly. Well, as much as a single Mum can do! You need this time to process this diagnosis. Whether you expect it or not, the diagnosis is still a shock.

Use this time to find out about MS. Knowing your enemy is the start of managing your enemy. But, don’t use Dr. Google. You need to stay with creditable websites like the MS Society and MS Trust.

Lesions are a signpost to MS, but how many and their location are not as important as the symptoms they deliver to you. I must admit that “being constipated with heavy bleeding” does not really sound like MS.

You do need to live healthily, eat healthily and manage your stress. This latter issue will make symptoms deteriorate and may even invoke relapse activity.

Things will become clearer for you when you get to meet your MS Nurse. These are specialist Nurses that only deal with MS patients, so their knowledge of the condition may exceed that of a general Neurologist. And they have more time for you.

So, any questions? Ask away………..


Anonymous
3 weeks ago

Thank you Stumbler,

So in a nutshell you’re saying I’ll be ok? How do they figure out what stage we are at with MS? Do they base it on the lesions or symptoms?

I’m assuming i have the relapse remitting form? But that being taken from Doctor Google 🙊lol

Thank you!


grandma
3 weeks ago

You are not alone! There are lots of us, different types of ms, different ages, different experiences, the one thing we all have in common is the beast🥊 Some of us, like me are old codgers, have had the beast for in excess of 25 years and tried a couple of DMT’s, we all react differently to these and what works for one might not work for another but onwards and upwards, you can always change if necessary, but your ms nurse, when you finally get to meet her (best thing since sliced bread as a rule) will advice what’s available for you, taking into account age, type of ms, lifestyle etc., as Stumbler says don’t panic, you’ve got ms for life so there’s no rush, sit back, have a cuppa, don’t stress out, nothing worse for your ms than stress, it can exacerbate symptoms. And remember, we’re all here to listen and advise if necessary and with ms there’s no such thing as a silly question🤙😜


Anonymous
3 weeks ago

Bless you grandma,
25 yrs is a long time.. I hope you’re dealing with it ok?
If I’m honest, I am worried. I know of a male who was diagnosed at 32.. he is now wheel chair bound, can’t walk, dress himself. Cannot even hold his youngest child.. he is flying to India in April for treatment.. he is now 42.. crazy how he has sadly progressed in 10 years😞

Thank you everyone, so glad you are all here for support! 😊

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