Newly diagnosed - advice. It' a minefield!!!

New diagnosis and before diagnosis
1

Hi.

i am newly diagnosed with MS and basically confused and depressed. Reading some of the posts and hearing some stories. I seem to have got to this diagnosis far ‘easier’ than others and as things stand, I do not seem to be having some of the issues that other people have had. I’m still worried though. When I saw the MS nurse, the first thing she asked me was how I was feeling. Depressed/stressed/worried and angry was my response and I can’t shake that feeling and that’s not helping. During the autumn of 2015 I started to notice my legs starting to behave weird. Jelly like after 20-30mins, like I’ve been in the pub on a 10 hour vodka bender. Combined with a few other minor things that you might expect at 50, I went to the GP. I eventually got referred to Neuro and after initially putting it down to high blood pressure, I got sent fir a scan which showed the lesions and the resulting diagnosis. I have been told that I have relapsing/remitting but don’ t feel I have had any ups and down. My mobility has no doubt declined in the last 8 months but as I say for me a bad day is legs feeling heavy from the word go but I can still mobilise it is just that the ‘lead boots’ are a bit more apparent occasionally. My balance has gone downhill but I don’t get that when walking, more in the house or if turning etc. My wife says occasionally my speech is a teensy bit slurred but not to any major degree. I have fidgety spells when I’ m sat watching telly or in bad from time to time and yes I do get a bit tired but again nothing significant. The MS nurse has recommended I start either Aubagio or Tecfidera but don’t feel I’m ready to. To be honest the side erects scare me especially Aubagio which is only level one but can thin the hair/ hair loss - vain git really don’t fancy losing my hair. Can anyone offer any advice on this. How ,unchanged worse am I going to get?? I know this is a question that no-one can really answer as everyone is different. Part of my worry is my wife and I do not have a support network. We have a teenage daughter with Downs who is going through a really bad time emotionally and potentially due major surgery for scoliosis this year, so all this MS crap couldn’t have come at a worse time - hence the stress levels. My employer (local authority) aren’t being as helpful as they possibly could either. Sorry for the long post - good to get it off my chest. So any advice particularly around my symptoms and the drugs would be appreciated.

2

Hi Dj,

My ms was also confirmed around 50, after experiencing almost identical symptoms to yours.

At first my GP put it down to a trapped nerve but whn things didnt improve and basically got worse ove a week or so another GP contacted my local MS clinic, but only because this GP was concerned when I mentioned that my sister and cousin had MS.

Anyway the out come was Relapse & Remitting, but if I’m honest after almost 4 years since being diagnosed I’ve never actually felt that the symptoms have entirely gone away (remitted) , in fact I think they have very very slowly built up , some days/weeks worse than others but ALWAYS with me.

Like you get the fidgety legs watching tv, the lead heavy legs.

At first everything was very minor after the initial attack settled down, but over time those minor symptoms have increased in strength and are now with me everyday.

Last week after a particularly poor few weeks I contacted my MS clinic and after detailing what was going on was asked to come in to see the neuro, after some chatting and doing an examination he said that there was a “hint” that my Relapse & Remitting had gone onto secondary progressive, which came as no surprise because I’ve never really felt that it had ever actually remitted at all, only grown ever so slowly, even though I was always diagnosed as having Relapse & Remitting !

I’m still working but it’s getting very hard.

Thinking back to when I was first struck with this crap illness I was going through a lot of stress, a few months before my symptoms my father in law was taken into hospital with bowel cancer where he then had two heart attacks, then within that same year my mother in law passed away from pancreatic cancer, then my father was diagnosed with bowel cancer, both myself and wife were trying to hold everything together but it was such a stressful time.

18 months ago my mother was also diagnosed with pancreatic cancer and passed away just 9 weeks later, so over the last 4 year both myself and wife hav lost both our mothers to the same cancer and both our fathers have had bowel cancer.

So now we are trying to look after our elderly fathers whilst trying to cope with my MS and also my wife’s poor ill health.

If MS can be triggered by stress then I was a sitting target.

Life buddy is hard and savage sometimes.

As for medication, well I’m on D3 which I’m guessing is pretty much standard for MS sufferers, Gabapentin for muscle surges/spasm and will be soon starting Baclofen to try and help with stiffness and heavy legs, but I’m a little concerned with the side affects off this drug so will be taking it ut also be very cautious at the same time.

I’ve never ben offered DMD’s as I’ve never had an obvious relapse, at least I dont think so ?

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hi

if you have a chance of DMDs, grab it with both hands.

like you i feel that i’m on the decline but don’t want to give up my tecfidera.

as for side effects for tec.

i’m being closely monitored for my lymphocyte levels, see ms nurse every 3 months and have blood taken while i’m there.

it has a 55% reduction in relapse rates so for me it’s a must.

good luck to both of you.

try to avoid stress because it makes everything worse.

mindfulness meditation is brilliant for this.

carole x