Is your MS neuro optimistic or pessimistic?

Hiya

Had my yearly consultation with the Neuro yesterday. 15 mins this time. Wow! Even though the previous MS wheelie had 30 mins putting us behind. Boo! LOL!

We are both pretty frank over this MS malarkey. As he used to be an MS progressive researcher down south, I asked him a couple of questions, being in his books an SPMS patient:

What do you think of stem cells? He replied that he thought it was the future a couple of years ago but has doubts on it now. His best way forward is Simvastatin - a type of stain as you must slow or stop the brain atrophy.

My wife asked him the big question about will we get to see cure or a ‘fix’ for my condition. “Not in my career,” he replied.

I thought he’s got about 20 - 25 years left. So oh well then.

He did leave me with a big conference he went to and there where hundreds of MS bods getting their heads together. And they had plenty to talk about. “It was pretty good,” he said. Nothing like a good chin wag and a possible a drink or two - I think.

So it was an overall downbeat chat but with a sprinkling of ‘you never know’. So what is your MS Neuro like? An Optimistic? Or Pessimistic type? Realistic or Dreamer?

Marty - waiting for the Miracle Bod

Mine is very optimistic, said to me, we will stop it and possible even cure you. So fingers crossed Gray

Mine seems optimistic, always tells me what new drugs are on the horizon and that there is always something else to try if the latest drug doesn’t work. As he says, there is so much research going on that there is always hope.

Tracey x

Mine is very optimistic. He’s involved with a lot of research in the UK and abroad and is convinced there will be a cure (or as near as) within the next 15 -20 years, and something which can help reverse the damage already done too. I love my visits to him as he always has news of a new drug or a better drug! He’s also up on the complementary therapies which can help, but is honest that they’re not a cure and don’t help everyone. I think a bit of positivity can do wonders for us!

Mine is realistic but also optimistic. I know he doesn’t think that there is a cure in the pipeline in this lifetime but he is very optimistic about how much diagnostics and treatments have come on in the last few years. He keeps abreast of new research and treatments and while he is matter of fact and doesn’t mislead me, he is exactly the way I want him to be. Honest without being a total downer.

Mine is 14 years old so is naturally optimistic. You should see his face light up when the bell goes for playtime!

Seriously though, he does seem optimistic but is cautious about giving any false hopes. Just the right combination I would say.

JZ

mine said when i was dx in 2010 there would be a cure in 5 years!! so only a year to go!!! tc…

Try as I might, I just can’t believe in fairy stories. Realism works best for me.

Hi. I have SPMS and my Neuro is unable to give me any hope. He is not aware of any possibilities even in the pipeline. He did, however, recommend Simvastatin 80mgs, so that is what i have just started 3 ago. It’s worth a try I suppose.

Hi, It’s difficult to say whether mine is optimistic or not. My 30 minute reviews, approx once a year, usually take the form of her asking how I am, with her then arranging appointments with other departments as required, eg. Physio. I think the overall feel of the appointment, is that her role is to help me cope with living with MS, nothing more. I think that’s why I’ve always tried to do as much as I can for myself, eg. through diet. There’s not much others can do for you, regardless of their medical status, other than try and make your life more bearable by whatever means they specialise in. Expecting more is just setting yourself up for a huge disappointment. And expecting a “cure” to come solely from research using chemicals is, in my opinion, arrogant. There’s so much knowledge out there. Why pin all your hopes on a field whose standard response is “maybe in 10 - 20 years”? Heather

Hi. I have SPMS and my Neuro is unable to give me any hope. He is not aware of any possibilities even in the pipeline. He did, however, recommend Simvastatin 80mgs, so that is what i have just started 3 ago. It’s worth a try I suppose.

When I had my last appt with my neuro last July, he basically said that, as I appeared to have moved to a progressive form of MS, there was little he could do. He always seems to be featured when there are stories in the local media about new drug treatments for RRMS patients, so that seems to be the area he’s interested in. He mentioned, in passing, about transferring me to another doctor who dealt more with ‘progressive’ patients (also mentioned in the copy of the letter sent to my GP which I received), but I’ve heard nothing further.

Neil

Hi, Im a tad confused.......this talk of simvastatin...its for cholesterol reduction, isnt it? I was on until it was change to atorvastatin.for the same thing.

So how does it help with brain atrophy?

The conversation you had with your neuro sounds like a meeting between folk interested in MS, not a medicaly qualified neuro…something like what we have on this forum, no?

I`ve seen 16 different neuros in as many years, the majority were optimistic but admitted they were stumped by my condition.

Pollx

http://www.mssociety.org.uk/node/657745 I hope this link works. There have been trials of Simvastatin and SPMS. “Statins have also been shown to have an effect on the nervous system as a neuroprotective agent and an anti-inflammatory”.

There have been trials of Simvastatin and SPMS. “Statins have also been shown to have an effect on the nervous system as a neuroprotective agent and an anti-inflammatory”.