spuddie007 09/10/14
Last reply 3 years ago
Newly Diagnosed MS, new to Shift.ms

Hi Everyone

I’m a very very recently diagnosed MS sufferer after two ‘attacks’ in six weeks and confirmation from a Neuro Super Specialist. Have been in hospital twice in six weeks with seperate attacks on the left and right side.

Currently suffering from muscle weakness and numbness on my right side, have come to terms with what’s happened as I know there is simply nothing I could change.

Neuro outpatients next week where will be given options for meds, there was a mention of Betaferon injections which I am not looking forward to. Today I have been to a Blue Badge assessment and it’s been approved which I am happy is the case.

Just thought I’d shout out and say hi, based in North London.

Thanks – Spuddie007

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xristov11
3 years ago

I have had MS for 30 years, since the age of 40 in 1982. I have found hyperbaric oxygenation treatment (HBOT) can help in the management of symptoms. I attend one of the MS Therapy Centres for HBOT. There are 65 centres in the UK. They are all registered with the Care Quality Commission. Email me if you would like more information.

Regards

Christopher


stumbler
3 years ago

@spuddie007 , welcome to our bit of cyber-space.

It’s good that you are adopting a philosophical view of this unwelcome development in your life. Worry and stress seem to be major antagonists of MS, so avoiding these negative emotions is beneficial.

With some good fortune, you may be able to recover from the muscle weakness and numbness. Be patient with yourself and allow your body to recover. Moderate exercise is good if you can manage it. Just start slowly and build up as you feel able.

Well done on clearing the Blue Badge hurdle. This facility always helps. Please ensure that you have advised the DVLA of your diagnosis – this is a legal requirement. You car insurance company also need to know, but should NOT load your premium.

Any other questions, please feel free to fire away. 😉


spuddie007
3 years ago

Hi Christopher – I am exploring this option through my private healthcare plan with some help from my employers, they’ve been great so far with all of this, I clearly can’t make up the diagnosis 😉


spuddie007
3 years ago

Hi Stumbler – thanks, yes I’ve started stimulated scalp accupuncture to try and ease the pain in my knee which is actually helping but I’ve got serious balance issues at the moment which are easing slowly. Once that settles I’m getting in to the gym for some gentle sessions to get the moderate excercise box ticked.

I’ve already notified the DVLA using the relevant form, should I wait for a reply from them before informing my car insurer do you know?

I’m actually surprised they passed me for a Blue Badge but it’s defininately a good facility to have in my back pocket.

Negativity about the MS is just another stress, it is what it is, I can but hope in future there wil be a cure or at least a medicine or treatment that can ease the effects!


stumbler
3 years ago

@spuddie007 , balance issues are no surprise. We balance ourselves using three senses, the balance mechanism in our ears, our visual feedback and the physical feedback from our legs/feet. MS can affect all three, although just having one of these senses not working 100% throws us out.

As far as your car insurer is concerned, they would need to have your diagnosis on record. All they’ll really be interested in is that you have advised the DVLA.

You have a good attitude to this. Yes, there may be a cure, but there will be better medical treatments, as medical science continues to press their present boundaries.


cameron
3 years ago

Hi there – before you go on Betaferon, make sure all the options are explained to you. Deciding on first-line therapy (i.e. Betaferon or Avonex or Rebif or Copaxone plus [I think] oral alternatives) needs careful consideration. Each has pluses and minuses, so you need to get it right. The good news for you is that once on therapy you’ll be monitored by the nurse team: this is helpful because it gives you a platform for discussing/managing the illness. Once you’re ‘launched’, I recommend seeing out a neuro physio (you might have to do this privately – you can usually self-refer). Neuro physios tease out exactly which muscle groups are affected and start you on remedial exercises. After 11 years of MS I still see mine very regularly and know it’s kept me OK. We are all in danger of causing MORE damage through compensating in our unharmed muscle groups – this is called MS secondary damage and this CAN be cured. Lots of luck – you’re on your way to getting your life back!


spuddie007
3 years ago

@cameron Thanks for the advice, it was all a lot to take in two weeks ago when I was given the news, so I have a neuro follow-up on Monday where all the options will be given to me to make my decision. Good to know that there should be an MS nurse for follow-up but I will ask about these options on Monday, thanks for letting me know!!

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