Last reply 2 months ago
New to MS

Hello, I’m new to the group and was recently diagnosed. I have to have a spinal tap next week and I am pretty nervous. I must admit, I’m scared. I guess I’ve known that I could possibly have MS for about seven years. I ignored the symptoms and never went through with the tests. Within the last year the symptoms have become worse and I’m following through. I’ve had two MRI’s done and it was in those MRI”s my neuro discovered the MS. The spinal tap will tell what my progression level is. I am a very active person but I have found it more difficult to work out. My vision becomes blurry and my legs are in so much pain. My worst times are when I have the “MS Hug” and when I can’t feel my feet. I stumble so much and just the thought of having to give up my heels depresses me. Is there any advice for a person newly diagnosed.

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2 months ago

Hi @evangela and welcome.

I can only offer you generic advice, which is to give yourself time to process this diagnosis. Live healthily, eat healthily and avoid stress. I know that latter piece of advice is difficult, but worrying does not achieve anything.

There is life after a diagnosis and there are a range of treatments to slowdown, or even stop, any progression.

2 months ago

[email protected] first of all take a deep breath, sit down with a cuppa and relax. You have just been given a huge piece of information even though you suspected. You are just at the start of a journey and you will be on it for a long time, but if like so many of us the dxd is almost a relief, you now have an explanation for all those strange things that have been happening to you, it’s almost a relief to know your not going nuts! You are due to see your neurologist soon and you will have the rest if your tests. Then he/ she will decide what DMT to put you on. Until then, you can’t do anything, stress is proven to make ms worse so don’t worry about things you can’t change. We’re always here for a natter, a rant,moan,cry, whatever floats your boat. You aren’t saying or doing anything we have not said/ done ourselves. And remember, with ms, there’s no such thing as a silly question👂🥊😜

2 months ago

Hi @grandma and @stumbler. Thank you both for the advice. I’m taking it one day at a time. I failed to mention that I’m also getting married next year. This has just been a lot for me right now. I’m definitely keeping my stress level to a minimum.

2 months ago

@evangela & Welcome,
I ignored symptoms for years too so I understand where you’re coming from.
I suffer the MS hug but have grown to remain calm when this discomfort hits.

I so hated giving up wearing my heels so angry at this demon MS, held on to all my footwear for years in the hope ‘perhaps one day’, I’d take em out of their boxes admiring them, hoping……
Then one day that ray of sunshine shone, I got my balance, wasn’t tripping over my own feet, (I was injecting Copaxone daily at that time) I felt free at last to wear my heels……
What I’m trying to say is don’t give up hope, this diagnosis does take time to get the head around, like me you suspected for years, but when it’s confirmed….. Your thrown into a state of confusion & yes scared……
Give yourself time to accept that you suffer MS…… Try (I know it’s difficult) not to worry regarding spinal tap, easier said then done, please try not to worry….. Don’t stress……

BTW I couldn’t feel my feet for years still got to wear my heels for a time.
(I don’t now, & gave all heels to charity)

Try not to overtax yourself.
Look at it this way if you can, when you have the tap & results you’re another step closer to thinking on what avenue you’ll take with regards to medication.

Keep the sun shining in your heart.
There is life after diagnosis.
Jane 💜

2 months ago

Do not be nervous as the doctors are very good at they job.i did have trouble when I had mine done.first time he tryed 3 had it done but scan and I did not feel Do not do scared and a nurse will hold your hand.

2 months ago

Thank you so much for the kind words. I really appreciate it and thankful

2 months ago

Good luck next week @evangela. Let us know how IG goes! 😊

2 months ago

@rmdaniels i sure will. Thank you

2 months ago

@evangela , an upcoming wedding. How exciting!

Just remember, this is your day, you are the Princess. So, let all your servants worry and organise all the celebrations.

This will build up like a tsunami, so just ensure that you’re on your surfboard and enjoy the ride. You’ll have a great day.

2 months ago

@evangela try not to worry about the lumbar puncture when I had mine done last year it was painless remember to remain flat for a while after to avoid a headache and once home go to bed and be waited on til the next day. That’s what I did and had no headache whatsoever. I hope it goes as well for you keep us updated and good luck with your wedding day xx

2 months ago

@avangela sorry to hear you are struggling. I was just diagnosed last september and i think im finally coming to terms with it. Although each week i seem to get a new symptom and it throws me back again!
Positives though, the lumber puncture was a little sore but really nothing to worry about and I was fine after. Not on any drugs at the moment and im trying to get healthy. Losing a bit of weight has helped with muscle fatigue.
And not pushing myself too hard! If i have a really busy day it wipes me out for the next couple of days so advice would be try not to take too much on
Iv found telling friends and family have helped. I have a 2 year old and 3 year old so not much choice other than to carry on!
Good luck!

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