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Steroid advice please!

Hi

I started experiencing tingles in my arms and legs approx 2 months ago, I have had a similar experience before about 7 years before. I went to my GP who asked if I had ever had a similar problem, to which I responded ‘yes’. Anyway, he put my on a course of steroids and referred me to a neuro. After several blood tests, MRI, etc, the neuro concluded that it was very likely that I had benign MS, and that I needed to let my body sort itself out and he was pretty sure it would and I would probably be symptom free again for another 7 years! Anyway, since this, I have been taking nothing to help the tingles etc, but they do not seem to be getting any better. Some days the symptoms are not too bad but the past week there has been no improvement at all and today it felt like it is slowly getting worse. I have made an appointment to see my GP tomorrow as I am considering asking to take another course of steroids again and see if this helps at all. (I cannot really go back to my neuro as I have a limit on how much outpatient I can have per year and am pretty much up to the limit!)…So I am hoping someone can give me some advice, is it sensible to take more steroids, should I just do nothing and live with it??? I have no idea what to do!!! Thanks for reading

I’m wondering where you are in the world because GPs in the UK wouldn’t normally prescribe steroids without a diagnosis and the approval of a neurologist.

If you are in the UK, then I’m wondering what dose of steroids you were given.

Anyway…

Steroids that are used to treat MS relapses are typically 500mg or 1000mg of corticosteroids for 3-5 days. They work best if taken early in a relapse, but they do not always work. At best all steroids do is shorten the duration of the attack; the residual symptoms are the same whether or not you take steroids. If the attack is debilitating, then shortening it may be very sensible. If it’s annoying or can be treated with other meds, then it’s a bit daft, in my opinion.

If I were you, I would be asking for neuropathic painkillers rather than steroids. Something like amitriptyline, gabapentin or pregabalin might take those pins & needles away, without the need for steroids.

It’s also pretty early days. Relapses can last many months and symptoms can come and go within that time - just when you think things are getting better, they get worse, but also vice versa.

I hope things start to improve soon for you, whatever you decide.

Karen x

Karen, thank you so much for that advice. I really do not want to take steroids again, just getting a bit desperate! I will let you know what the dr says!! Thanks again for your reply, and I hope you are ok! xx

Advice please

Hi

I am posting this to see if anyone can help. I was diagnosed back in October with benign MS and was adviced by my neurologist that time would help my symptoms and that basically I needed to play the waiting game. I have had permanent tingles and numbness in my hands, legs and feet but within the past few weeks these symptoms have got a lot worse. I take vitamin supplements such as Vitamin B12, Vitamin D, Gingko but nothinng seems to help me. I have read that often changes in seasons can make MS symptoms worse, but I have no idea if this is true and wondered if anyonne else is experiencing a similar problem?

I am due to go back to see my neurologist at the beginnig of June, but am now feeling very sceptical as he never seems to be able to offer me any way of making this any better and charges me a fortune for the pleasure! I feel like I am fightinng a loosing battle so any advice, ideas would be very greatfully received!!

Many thanks to you all !!

Ruth

Advice please

Hi

I am posting this to see if anyone can help. I was diagnosed back in October with benign MS and was adviced by my neurologist that time would help my symptoms and that basically I needed to play the waiting game. I have had permanent tingles and numbness in my hands, legs and feet but within the past few weeks these symptoms have got a lot worse. I take vitamin supplements such as Vitamin B12, Vitamin D, Gingko but nothinng seems to help me. I have read that often changes in seasons can make MS symptoms worse, but I have no idea if this is true and wondered if anyonne else is experiencing a similar problem?

I am due to go back to see my neurologist at the beginnig of June, but am now feeling very sceptical as he never seems to be able to offer me any way of making this any better and charges me a fortune for the pleasure! I feel like I am fightinng a loosing battle so any advice, ideas would be very greatfully received!!

Many thanks to you all !!

Ruth