joolzmac 11/03/17
Last reply 1 year ago
Newbie

Hi my name is Julie just diagnosed on 30 January 2017!

I think I’ve had ms for 10 years tho as I had an MRI scan in 2007, with neurologist saying it looked like a bacterial infection in spine. Around 3 years ago i went to GP with what I now know is MS hug, and other tingly experience’s through my hand. I was referred to a Neurologist but I cancelled appointment as everything had disappeared.

So this relapse was a biggy and I’m still not over it.
It started end of November with being cold and numbness in my feet, then double vision, balance was off, smell of food, noises that’s when my right side started not to work.
I finally got admitted to hospital on the 26 Jan 16. Had all the tests, had 3 days of intravenous steroids had appt for neurologist on 30th and was told the news I had no idea so it was quite a shock.

Seen MS nurse but still not seen a neurologist to get meds sorted. Appointment is not till April!

I am going through every emotion got a wonderful husband and a 12 year old hormonal son.

Physio comes in couple times a week to help with my balance and get me walking again!

Julie x

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stumbler
1 year ago

Hi @joolzmac and welcome.

Getting a diagnosis of MS can be a shock. It’s for this reason that things then seem to move slowly. This allows you to take the diagnosis onboard and find out a bit more about it, before the next consultation.

So, the usual advice is to take things easy. Well, as easy as you can with a 12 year old hormonal son! Look after yourself by adopting a healthy, balanced diet (which you probably have already) and avoid over-doing things.

Stress is to be avoided – yes, I know this is a difficult time, but stress doesn’t help the situation! Stress releases chemicals in your brain that can adversely affect your Central Nervous System (CNS). The same CNS that MS is attacking.

MS is not going to kill you and is now a manageable condition.

So, in the meantime, read up about MS – something I can see that you’re doing, by joining us. But, beware of consulting Dr. Google, who can find all manner of horror stories, which may be out of context. Stick with reputable websites, e.g. the MS Trust of MS Society.

And, of course, you can always ask questions here. 😉


makkymee
1 year ago

Hi @joolzmac

Sounds like you’ve had a horror of a relapse but hopefully you are coming through it.

Being diagnosed is a great big shock. You’ve started on the emotional roller coaster, which I think most go through. There is a time when you’ll learn that you have options and you’ll be able to step off your roller coaster.

Don’t be too hard on your emotions and I know April sounds a long way off, but it will be here in no time. Start writing your questions for your neuro and of course ask us lot.

Make


californiadreamin
1 year ago

Hang in there. There are lots of emotions but it important to remember it’s unlikely you will experience all the worst fears. Many things might not be as bad as you fear. My wife was diagnosed last year and it actually brought our family closer together.

We follow the overcoming ms diet and all the steps it suggests. It’s given us a lot of hope and she is also taking Tecfidera.

One thing I would suggest as others have is read up now on your options. Get familiar with your choices because assuming the dr is going to tell you everything might be expecting a lot. There are a lot of things in terms of living with it that’s helpful and not something most drs will go into.

Something like vitamin d3 I would not wait and start taking right away (though I am not a dr and not sure what your levels are). Might good to consider that for your son as well.

Anyway I personally found the overcoming multiple sclerosis book a really good starting point and highly recommend it. There are many others but that was something super informative and calming for me and my wife.


koffeelover
1 year ago

Hi @joolzmac
I’m fairly recently diagnosed (1st September 2016). I was put on Tysabri (IV infusion every 28 days) which is used for aggressive MS, or if first line treatments have failed. I can definitely recommend it as I have no side-effects, and no further relapses (had at least 6 relapses from January 2016 – August 2016).
It’s totally normal to feel emotional – we all go through a grieving process after diagnosis, and it’s different for everyone. MS is different for everyone as well!! ‘No two the same’ is so true!! xxx


marlein
1 year ago

Hi Julie,

What an amazing story. I’m also new at this community. I’m diagnosed on 31th of August 2016. So also pretty fresh. First it was really hard to deal with, but after 2 days I start working again. Everybody is saying that I’m strong, but I can sit in a cornor and cry or live my life. So that choice is not that difficult I think.

Before I’d knew that I have MS, I had two schubs already without even knowing it was MS. They were thinking about grit in the vestibular, but it took more than 4 months before I recoverd. And they couldn’t find another reason of dizziness and instability. After that I had a deaf feeling in my leg. They thought of an incipient hernia. Than did go away by himself. Half of December I get a deaf feeling in my left leg again. But now not in my upper leg but in my lower leg. Last weeks I moved to my new house. Now my whole leg is feeling deaf and I lost a lot of strength in it. Also my right foot is feeling deaf now. Me left leg is feeling colder, is this normal? All these kind of questions I’m asking myself because I don’t know what belongs to MS and what doesn’t. So hopefully people over here can help me to answer these questions. My neurologist was saying in December that this deaf feeling couldn’t come from the MS because the MS was stable. There was only one spot more in my brains to see on the left sight. So that doesn’t stroke with my left leg. But he only made a picture of my brains and not of my back. And I had a deaf feeling in my left leg before so is it not that spot again? So like I said many questions

Hopefully here we can help eachother with these kind of questions and getting stronger together. And sometimes it’s just nice to tell your story to people who really know what you mean. people in your area are trying to understand, but it is difficult for them to completly understand.

xx
Marlein


stumbler
1 year ago

Hi @marlein and welcome.

Yes, historical MS activity can leave us with resultant damage, giving us symptoms that stay with us, e.g. https://www.mstrust.org.uk/a-z/altered-sensations .

And, you’re right, there could be some MS damage on your spine too.

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