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oh well....

Went to meet my new neurologist this week who specializes in MS. He was very nice but was unable to put me forward for DMDs. The reason being, I’ve now got progressive MS with the odd small relapse thrown in for good measure. As I recover quickly from these ‘blips’, there’s no point in throwing more medication at me. From now on, I’m purely to be kept an eye on… Oh well… Keep smiling and try and stay positive I suppose… Julie xx

julie

just wanted to say that i have read this. i dont agree with what ur neuro has said but…

as an aside the expression specialises/expert in ms always make me smile cos i dont believe for a second such a thing exists! an expert something thats so variable for everyone is just not possible. i know there are trends/similarities/studies etc etc but we all have our own unique variety and we dont have a neuro each!

This seems strange to me, we are all left with symptoms after relaspse unless we are very lucky and if you are still having them I think some Would give dmds as some are in trial at the moment for progression as well so could help you. Maybe worth speaking to the ms nurses about this if you feel this is a route you would like to try xxx

unless there is a hazard or risk in prescribing medications, i do not agree with this attitude towards not providing any drug therapy for those deemed ‘progressive’.

it’s not as if pharmaceutical companies are about to run out!

but you have other things, diets, vitamins supps and lifestyle regimes that can perhaps be equally as effective in warding off ‘blips’ and maintaining as much of your current life as you desire.

the very best of luck, never take second best and always consider getting a new ‘new neuro’.

Never forget, when it comes to MS ALL doctors are quacks who’re only making ‘best guesses’.

Have you been on DMDs previously Julie, if so who stopped them? I have never had them because I didn’t have sufficient relapses or didn’t report/consider them as relapses. I have been getting progressively worse since a particularly bad relapse almost five years ago, my MS Nurse now says I’m SP so again no DMDs.

Keep smiling.

Jan x

Hi, thanks for the responses. I’ve not had DMDs before. My consultant referred me to this new neuro to see if I was suitable but it turns out I’m not. I take gabapentin, was on Baclofen but they did nothing really to help me so I’ve gone back onto Amitriptyline as they ease the pain a bit. However, I am getting painful spasms again. I don’t know what to do. It just feels like I’ve been chucked into the group labelled progressive and told “sorry, put up and shut up”…

Shouldn’t you start the Baclofen again, it will help with your spasms.

Hope you feel more positive soon

Jan x

Hi Jan, instead of Baclofen, my consultant suggested I go on to carbamazepine but they made me very drowsy and gave me horrendous nightmares. I weaned myself off Baclofen whilst taking this medication. My ms nurse is going to see if he’ll recommend an alternative but until he agrees, my gp isn’t happy to prescribe anything else. I’m fed up of it all. xx Julie xx

At least they are looking into various ways of controlling your pain and spasms, what works for one doesn’t always work for someone else. I take Baclofen for spasms and Amitriptyline for neuropathic pain. I just thought as your spasms have started up again after coming off Baclofen, then take Baclofen again to stop them, if only it were that simple. I do realise it’s a balance of meds we need though and your MS Nurse does seem to be trying to find a solution for you.

Hope you get some relief soon, I’m not surprised you’re fed up with it all.

Jan x

Except vitamin supplements seem to increase your chance of dying, so you probably don’t want to take those. Here’s a quote from the NHS choices website (there are plenty of other studies which say the same thing)

“Women have been told there is ‘little justification’ for taking vitamin supplements in an academic study that found the tablets may be actually linked to a higher risk of death,” The Daily Telegraph reported.

This study looked at deaths and causes of death in women with an average age of 61 years, and their use of vitamin supplements. It found that women who used certain supplements had a greater risk of dying earlier than women who did not use those supplements."

There have been lots of longitudinal studies (i.e. ones that follow people to see what happens to them, rather than making an intervention) which show increased death rates for people who take multivitamins. It’s amazing to me that there’s still such a big market for these pills.

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An interesting article which ends with:

“The study does not take into account whether the women using the supplements are doing so in response to illness, for example using iron supplements in response to anaemia (which is estimated to affect around 10-20 per cent of women in this age group). Whereby it is most likely the illness that is the cause of the women dying, not the supplement use.”

In addition:

“The researchers… concluded that only those with specific deficiencies should take vitamin pills.”

For example - D3 for those with MS.

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Like I said, there are studies dating back 30 years suggesting multivitamins are probably not beneficial. I do take lots of vitamin D, just in case it helps. Are there studies showing it does? I haven’t seen any, or any that show that diet helps. Lots of alternative therapies are invented by crooks and sold to the desperate (that’s us).