helenccjordan 17/02/17
Last reply 1 year ago
Recent diagnosis questions!

Hi all,

Last time I posted on here I wasn’t sure if I had MS or not. On Valentine’s Day this week, I got my diagnosis. The neurologist has recommended I start treatment and I’m just waiting to go through the available options.

I’ve done a bit of reading but the side effects aren’t really selling any of them to me.

Does anyone have any tips or suggestions to what the best options are.

My type of MS is relapsing remitting.
It’s been a strange week. I feel ill since I got my diagnosis which is strange as I was feeling quite well before this. I seemed to have gone tired & getting headaches & tingles again. I’m not sure if it’s coincidence or what?!

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stumbler
1 year ago

@helenccjordan , getting a diagnosis of MS would make you go a bit strange. Whether you were expecting it or not, it’s still a shock to the system, with a potential peak in your personal stress-ometer.

And, we know that stress can make our MS play up. So, you need to try and stop yourself worrying about this diagnosis and your future. I know I’m asking a lot, but you need to try.

As for the Disease Modifying Treatments (DMTs), they all come with risks. But, these are known risks, so you will be closely monitored to keep these risks in check. What you need to understand is that there is a risk that MS can progress and cause unrecoverable disabling symptoms. DMTs are used to reduce the frequency and severity if relapses.

The latest school of thought with MS treatments, is that you should hit MS hard and hit it fast. So, do your own research on DMTs, so that you can take an active role in any discussions on these treatments.


spunky
1 year ago

Hi
I had the same symptoms after I was diagnosed. I was so anxious and any time my arm or leg “fell asleep” I thought that it could be the start of a relapse. It will take a while to get used to the diagnosis. I haven’t had any symptoms (besides fatigue which may or may not be related) since my diagnosis but not a day goes by without me thinking about it.
As for the DMT, I asked for the MS neuro’s recommendation and I researched the 2 drugs. I chose the pill (Aubagio) over the needle (Copaxone) as I would rather temporarily lose some hair over giving myself a needle everyday. If I was offered a stronger DMT I would have likely taken it. Be sure to do your research and remember you may have no or few side effects from the DMTs if that is the path you choose. Good luck!


Anonymous
1 year ago

Hi Helen, I’m from the other camp as I don’t take any treatment and I’ve been diagnosed with rrms for 11 years with no relapses. I suffer from fatigue and use diet – swank, oms, best bet diet, ms diet for women to name a few and added supplements. There’s lots of information out there, go with your gut instinct and don’t be forced into anything. Good luck 😉


helenccjordan
1 year ago

Thanks all for your replies.

I’m just waiting for the nurses to get in touch to discuss my options. At least the diagnosis helps me to understand why I’m tired so often.

I’m 35 but my energy levels are very poor at times. I have waited over a year for the appointment which I had Tuesday and suppose I went into denial and convinced myself that all was well and I didn’t have MS. The diagnosis was a bit of a shock as I thought the appointment was just a routine one.

Really grateful for the support of this group. Got a feeling that I will need it.

Thank you


Anonymous
1 year ago

Rest when you need to – if you can – or plan in a daily rest, that’s what I do. Also try and work out what makes you tired and either change how you do it, make it easier, stop doing it or do something different. You’ll find your groove, but like I said don’t be pressured by anyone. 😉


mogace
1 year ago

Helen
Getting a diagnosis is significant in that you now have a starting point to work out your options. There will be lots of info and opinions so you will need to workout what is most important to you and your own personal risk threshold. Remember too that things are not black or white, what works for me might be no good for you. Getting good info from people you trust is valuable, but remember whatever the letters are after someones name you are the number 1 expert on how you feel and your values.
Have a great day
Mick

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