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recently diagnosed with ms

Hi all my name is Sharon. I have just recently been diagnosed with MS at the age of 42. I know you will all understand where i am coming from when i say it was a huge shock to me and my family. My symtoms are starting to improve but very, very slowly. I mainly suffer with my balance, my right eye has returned back to normal after suffering from blurred vision and the numbness in the right side of my face has improved but what seems to be getting me down is the dizzy feeling 24/7. I have spoken to my MS nurse (who is fantastic) but my husband found this forum and told me to get on it and to speak with people who will understand me better than anyone. Sometimes i do wonder if i will ever return to normality, is my MS nurse right when she says it does take a long time for symtoms to go. Any comments and what to expect after your own experiences whether similar or not would be truly appreciated. xx

Hi Sharon,

I too have just been told I may have MS!!! I have had symptoms now for 10mths, and the dizzyness has never gone away. Also very weak and heavy arms and legs…I am 45 and feel 100!!

Going for blood tests and LP…not looking forward to the LP :-(. We have to just listen to our bodies and rest as much as we can.

Jan x

Hi Sharon, Welcome!

This site is great for help/support and advice. You have come to the right place.

I am 40 , diagnosed 7 years ago now.

I had exactly the same symptoms as you at the beginning and it did take a while to go. I was given steroids to help.

I am presuming you are in relapse at the moment but as you come out of it you should see some improvement. This is if you have relapsing remitting form of ms. Do you know what type of ms you have been diagnosed with?

If you have been diagnosed with this type you may be offered disease modifying drugs. I have been much better since i started taking them.

An ms diagnosis is a massive shock - i likened it to being hit by a ten ton truck. It takes quite a while to come to terms with it. Take it slowly, one day at a time and you will get there in the end.

Best wishes

Teresa.x

Getting the right medication makes a big difference.

Hi Sharon, and welcome to the site

Getting a diagnosis of MS is always a shocker, even when we’re expecting it, but it does get easier to get your head round it as time goes on. Ultimately, life might be different than you’d expected, but not only is MS really not the end of the world, it is amazing what we can adapt to. One thing is for sure: life with MS can still be good.

I was diagnosed 14 years ago and I can tell you that, yes, your MS nurse is right: I know people who have still had improvements after 18 months or even longer. I know it’s hard, but remission can be a slow process so try and be patient. Saying that, there are things that you can do for dizziness - seeing a neurophysio could help (there are exercises that can help) and there are meds too (has your MS nurse not recommended any, e.g. stemetil?). Your GP can refer you to a neurophysio if your MS nurse can’t.

Unfortunately, not everything gets 100% better after a relapse and this tends to get worse the more relapses we have. Teresa is spot on when she says that getting the right medication makes a big difference though: it’s quite incredible what meds can do these days!

So make sure to use your GP and the MS nurse to the full - and don’t wait for things to be offered! It’s a sad fact that it’s usually the people who ask, who get.

I hope the dizziness starts to improve very soon.

Karen x

Hi all, thanks ever so much for replying. I did try to send private messages to you all but couldnt for some reason, no doubt i will figure out the way to do things.

All of your advice really helped and made me more aware of what lies ahead of me, most importantly to be patient and positive.

As this is my first attack my consultant hasnt prescribed me any medication. He said that if i was to have a relapse then they would look at putting me on medication.

keep my chin up,

Sharon.xx

Hi Sharon,

I was recently diagnosed with MS too. It’s a bitch. My first thought every morning, for a month, was, I’ve got MS. Which was a very miserable realisation. In the back of my mind I knew that I had something for a very long time. I just didn’t think that it was MS as I had been told that they didn’t think it was. At the beginning of the year, I had a really bad attack that went on for 6 weeks. I took B12 and things got better. It has taken about 6 months for things to get back to ‘normal’. So hopefully, your symptoms will improve too.

I’m not on medication at the moment. I’m hoping to be put on them after my next MRI in November. I think that there are a lot of things that you can do to improve your symptoms yourself. I have cut out wheat, dairy and I am trying to cut out sugar but i find this very difficult as I have a very sweet tooth. :frowning: I’m sure that sugar has a really negative effect on symptoms, so I am determined to cut it out.

There are several supplements that you can take that will help aswell. I take B12 (100mcg), D3 (1000iu) and a probiotic. I also take 1/2 teaspoon of Ceylon cinnamon. I’m positive that this helps.

I think that having a positive attitude and having a good exercise regime are both really important too.

I feel really well at the moment and my first thought in the morning is no longer so depressing. I hope this helps and I hope you feel better soon.

Adrian

Hiya from me too…everyone else has said the things I would of.

One bit of housekeeping you do need to do though is to inform dvla (you can download the forms for notifiable illness) your insurance company (they cant increase your premium) and check if you have critical illness cover as ms is one of the claimable illnesses.

Be kind to yourself as you learn to adjust.

Pip

That’s very good advice from Pip. Be kind to yourself. Good health and have a great day everyone. x

Hello Sharon, welcome to ‘the club’ Frustration, confusion, symptom checking/analysing, etc.

As above with Pip’s points, as it can take some time to sort these practical things out (especially the critical illness cover bit).

I was diagnosed accidently last November (aged 40) post MRI scan on a possible back injury (due to years of abuse with running/rushing around at work), LP confirmed it. I was one of the lucky ones who could pin point a previous relapse (thinking it was an athletic injury at the time) so started on treatment straight off! People say the news hits you when you have to place in life changes. Mine was the fact I would have to slow down and eat healthier, a good idea. I also knew that the diagnosis was coming so not a shock to me or my wife, or my Mother . Even though I had not seen my Mother since before the episode she knew straight away as Mothers do!

Reading the NICE guidelines they suggest up to 15,000 iu of D3!! A lot of tablets unless you get it prescription (or move to a sunnier climate)

thank you all so much for your replies back to me, i am so overwhelmed by them all. Its great that i can talk to people who understand me, even though my husband and children are great, its still comforting to know you are all here to listen to me.

Hope everyone is feeling ok today, hugs to you all

Sharon.x

Hi Vince,

I think it’s about 4000. Unfortunately, I can’t take more than 1000iu as it makes me really wired. I use a light box. If you gave me 15,000 you’ld have to peel me off the ceiling. :slight_smile:

Since my referred to the hospital…my hubby has been investigating things to help me. Over the weekend he bought me some D3 drops which gives you 2500 iu per dropper and some liquid B12 2000 with B-complex which you hold under your tongue for 10 sec and then swallow. As I have had a gastric bypass he is convinced I am not digesting my vitamin pills properly, so I am also getting effervescent Vits shoved under my my nose every am… My only concern was I am on anti depressants and I know you shouldn’t take some stuff with them…

Why dont you ask the pharmacist you normally get prescripton stuff from as they know the most about drugs and interactions,and they are more than happy to do that.

Take care

Pip

I,ve just had tests with my GP for D3…which I found useful. I now know my levels and I’m on a weekly high dose till I get my levels right …so another test in 4 weeks. I’ve also been prescribed a daily dose of chewable tablets with calcium. Hi Sharon…getting the diagnosis is hard no matter what. I was diagnosed in March I’m 44; I’m still getting use to the diagnosis this forum can help getting clued up on the condition …and finding out how I can try and manage my symptoms has helped my positivity. Libby x

Hi Sharon and welcome to the site! I was also dx in March this year after symptoms not unlike yours, I was given IV steroids which were horrid at the time but really helped me to get out of the relapse. I couldn’t walk and had severe double vision/ no vision at the time. I felt very sorry for myself and must have been a proper pain in the ass for all my loved ones, though my 8 year son was thrilled because he thought I might get a wheelchair with an engine! To look at me now you wouldn’t know that there is anything wrong! Yes I get tired, I’ve given up work as a primary school teacher, that was my choice, I wasn’t enjoying the job any more. Life is good! I know that it feels like poo at the minute, but things will get better. If you need to talk we are here. If you prefer face to face, then I found my local branch of the ms society very helpful. You sound like you have a lovely caring hubby and that’s great support too, but don’t forget him in this too, they don’t say much about how it has affected them! Good luck Sharon, and if you have any questions at all please feel free to pm. Chis (also 42)

Hi all,

thanks ever so much for the recent comments.

Hi Chis, yes my husband has been great over these past four months and its good to hear that things do improve!. Its just frustrating at times and i still have the dizzy feeling which does annoy me. I have an appointment in October with my MS nurse and i will discuss about medication for my dizzyness if i still have it (which i probably will!) and hopefully she will prescribed something to get rid!

Take care for now

Sharon. x

Don’t wait till October - your GP can prescribe something for dizziness. Kx

Hi Karen,

Decided not to wait till october phoned MS nurse today and left a message hopefully she will get back to me and prescribe me something.

Hugs

Sharon.x

I have just been diagnosed with ms. My symptoms alleviated after several months and now pretty much like normal. I have done some research changed my diet and taking supplements… However I did use to drink Coke Zero quite a bit and only now learnt about the ‘evil’ aspartame.

Can anyone help me as I have a horrible feeling that this has brought about my diagnosis. Can the effects ever be reversed?