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New to MS

Hi my name is Robert aged 63 have been diagnosed with remitting relapsing Ms started 1st May with double vision then a few days later tingling in lower arms and hands saw doctors then neurologist MRI was put on high dose of steroids for 5 days eventually double vision improved but now nearly 10 weeks later still being unable to work(hairdresser) I still have tingling in hands and my vision comes and goes and feel very tired after any exertion . I have been informed by doctors and neurologist that these symptoms will eventually dissipate but how long?? Any advice would be gratefully received I am on beta blockers propanol and a small dose of gabapentin I appreciate that everyone has different levels of MS but as I am new to this I would really appreciate any feedback and help. Thanks

Hi Robert,

MS is an awkward condition in that it can be a myriad of things and can vary massively even in the individual affected. You will learn to listen to your body and to try and adapt to the many changing circumstances. Some of your strategies will be great and others will be rubbish, just try to learn what works for you but do not expect consistent or linear responses. None of this comes close to answering your question of “how long ?” That is because there is no definitive answer. I can tell you about my experiences but that won’t help much because my recovery time from relapses has varied between days/weeks and sometimes months. My understanding of the use of steroids is that they are used to support the body’s own natural repair and recovery system. I can also tell you that in my RRMS experience I recovered to between 75 and 95 % of where i was prior to the relapse, but others I know were not as lucky.

My suggestions to you are

1 learn to really listen to your body

2 make sure you have a great family / friends / professional support network.

3 remember that you are the expert on how you feel and have the right to question any professional advice you are given.

4 if you come to this site you will get access to some experience , wisdom empathy and humour that might help you cope with whatever your MS brings.

5 I would talk to your neurologist / MS nurse /GP about options for medication to reduce or slow relapses.

Sorry I can’t offer any decent answers but I wish you all the best

Mick

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hi robert i’m really sorry to welcome you to the club that you never wanted to join. however well done for having dodged the bullet for 63 years. i was diagnosed when i was 50, ten years ago but in retrospect i can remember odd things from my teens. as mick has said, everyone has a different experience of ms. we aim to stay positive and manage to do this most of the time, however there are times of bad language! the medication that mick referred to are Disease Modifying Drugs (DMDs). take care robert and hang onto your sense of self. carole x

The steroids do do a good job in my experience. I have had MS since the age of 19, now 43.I still get relapses but to be honest I have stopped working now so have nothing to rush back from a relapse for so I don’t bother with steroids as I don’t like how they make me feel. I am currently having another relapse, numb down my left hand side and completely knackered. My way of getting well is to watch a box set, read a book, live vicariously through some fictitious character while being dosed up on pregabalin, usually by the end of the box set I am starting to feel a bit better and try and start to crack on with my own life. It’s not great MS but far worse things you could get. For me I do what I can when I can and when I can’t I don’t fret about it. The relapses make you appreciate the remission. Good luck.

Thank you so much for your replies I am trying to come to terms with my daily changing feelings in my body (vision tingling stiffness etc) I am totally new to the forum so I will read my way through to learn about other peoples experiences and hopefully try and learn from it.Thank you again for replying Robert

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The best thing that you can do for yourself is to listen to your body and rest when you need to. That said, it’s still something that I struggle with going on 7 years now. Unfortunately, with MS, there’s no real answers to when symptom will ease or what the next will be.

Two weeks ago I lost my ability to taste; that’s slowly coming back to where I can identify sweet, but not know the source of it, so fruit, chocolate, sweet peppers all have a similar “flavor”. The time before, I lost feeling in my right arm and hand. I now have feeling again at about 75%. That said, we still occasionally lose bowls and cups when I put them away because I miss the countertop or cupboard.

Hi Robert. I was diagnosed with RRMS about 18 months ago. Started off with Optic Neuritis and then Transverse Myelitis which is inflammation of the spinal cord. After a 5 day course of steroids my symptoms did improve, however I have been left with lack of sensation/ numbness and pain in both hands which I believe has got as good as it will ever get as well as recurring vision and sensation issues in various parts of the body. MS is not an exact science and can take different forms in different people. I have good days and bad days but I am slowly learning to live with it. I feel for you and hope things improve further for you?

cstretton #6

you wrote lose “bowls” but i read it as “bowels”.

puts a whole different meaning on it!

i’m doing this a lot and it’s worrying.

I’d be lying if I said that’s never happened, but that’s a completely different problem…

hmmm!

How nice to be able to communicate with others who understand Thank you