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need advice

Hi,

Want to ask ppmsers what drugs your on and am i right in thinking there is nothing out there that can stop or even slow the progression down.

I was dx in Jan but before that i had transverse mylitis ™ Well i think i did or it could have been ms from the start, i dont really know now.Anyway i digress.

I was on Gabepentin, cocodamol and nitriptiline, my new ms consultant, who told me my dx, asked if i could come off the Gabepentin and not take so many cocodamol. This i have done after being prest into it by my family.

I have also gone onto the dr Terry Wahls diet to try and repair the damage(not sure it can,but again family thinks so).

Having vit d, turmeric and cayenne tabs also

Thing is my family seem to think i can get better, which would be nice obviously but i can’t see it happening. they come out with stories thev’e heard of people getting better after changing their diet ect and when i say yes but thats rrms, They say all ms is the same and i just dont want to get better. Are they right? Lisa.

Hi, so when did these family members qualify in dealing with MS?

Whenever i hear of anyone who was cured of their MS, I think 2 things.

  1. They never had it in the first place

  2. They were wrongly diagnosed (like me)

Some folk with PPMS say they feel better if they follow a certain diet. But a healthy diet is a healthy diet, no? So anyone would feel better on one.

There are trials for drugs which can help PPMS, but for now there are meds for the sypmtoms only.

eg

baclofen for spasticity/spasms

amitriptyline for nerve pain

oxybutynin for urgent bladder

quinine for restless leg syndrome

Your family are probably well meaning, but it can feel like bullying at times, eh?

luv Pollx

My understanding being a recent PPMSer is that the symptoms can be treated (ie bladder etc) but the MS can’t be. There is currently no treatment available for PPMS.

We’re stuck with this awful thing until something is found to work. Wish I was wrong.

In the meantime, it’s a case of knowing your own limitations and what rest you need to be able to cope better. All MS is not the same.

Hi Poll,

Yes it does feel like bullying, it gets me down sometimes.

This diet im on is very strict but im trying to do it so atleast they cant moan im not trying.

I did’nt think there was somethin out there but i thought i’d ask.

Thanks for the replies

Lisa.

There are no approved treatments for PPMS, but many people (including me) find that ldn can work rather well. Take a look at www.ldnresearchtrust.org and see what you make of it.

Your family are probably well intentioned, but wrong.

Hi Lisa, agree totally with Poll and Mr. Grumpy.

Our symptoms can be treated but not our MS. It is incurable and doesn’t respond to many of the treatments, steroids for instance, that are used to treat RRMS.

Your family actually sound pretty typical of other families on here who are in denial. They just don’t want to accept that you have an incurable, untreatable type of MS. They just want you to get better and in fact are now blaming you for having MS!

Show them these posts!

They need to get their heads around the fact that what you have will not go away. Yes some people say that certain diets or certain therapies help with symptoms… but basically there is nothing proven about these AND THERE IS NO CURE.

Hey Lisa’s family listen up!!! What she needs from you is support to help her cope with this progressive illness! Believing in nonsense cures is not helping her. Hell if there was a cure believe you me we would ALL be on it. NONE of us wanted this… but we are stuck with it and love and support from those close to us can make a HUGE difference!!!

Come and visit us whenever it gets you down Lisa. WE do understand what you’re going through.

Love Pat x

Hi all,

Thanks for all the replies, Iv’e heard of Ldn. Is’nt that the one you get free for two weeks/ month but after that if its any good, you have to pay for it yourself, if so, how much is it?

Pat, i would love to show them this but i can’t, they wouldnt like me discussing this but iv’e got to talk to someone and who better than other ppmsers.

I think your right in saying that they blame me and that ofcourse they want me better but i havent got a magic spell i can say to do that (if i had then i would let you all know it but i don’t)

Thankyou again for your support

Lisa.

No, that’s not ldn and you are thinking of fampyra, which might improve walking.

I get ldn prescribed by my GP, but it is easy to obtain privately if needed. While it’s far from a cure, it might help with symptom relief.

Hi again Lisa, LDN is very difficult to get on prescription. Hardly any GP’s or neuro’s will prescribe it. This is because it hasn’t been through the tests that NICE need to prove a drug is good for any particular condition.

The MS Society (this site) did some research on it but without dramatic results.

However some MSers swear that it has helped their symptoms a lot and maybe slowed down progression.

I don’t take it myself but if you want to know more look on the LDN Research Trust site. People who use it have to buy it through the internet. The LDN site will tell you more.

As for your family, well it is of course a real case of denial. By thinking that you have something that could be cured if only you took the cure, helps them feel better about it. They are able to tell themselves that it is your fault because the cure is out there.

Facing up to the fact that you have an incurable condition that might get worse is too difficult for them to accept.

It’s a hard one for you though. All you can do is keep on looking after yourself and keep pressing home the fact that there is no cure but you are trying things which might help your symptoms.

You are certainly not the only one on here who’s family are the same. Mine were a bit like that at first. When I first mentioned it ‘might’ be MS they said oh of course not don’t be silly. When I told them I had been dx with MS they immediatly started thinking there was a cure. Anyway, 5 years down the line they now accept that I have MS, am not going to get any better (unless the cure actually does come along!) and are very supportive.

It did take time though.

Take care Lisa and hope to see you back on here soon,

Pat x

Hi Lisa, You have had great advice from everyone and I just want to add my five penn’orth. It is such a shame that your family have such untrainable expectations of a recovery for you. As everyone says PPMS is incurable as is RRMS. ALL MS is incurable. People with RRMS have periods of remission where they feel better but usually after each attack they are left with a few more symptoms or increasing disability and their MS does progress. It may do that more slowly than PPMS but it may not. Each individual with MS has a very different version of this disease. It is hugely variable. Therefore, your family should understand that no one with it will recover permanently and support you, so that you can deal with it . People with MS can still lead a full life - you just need to make adjustments to incorporate it into your life. My immediate family - sons and husband have been great in coming to terms with my PPMS (I was only dx’d in Dec 2011) but my parents are in denial over it and often change the subject when it comes up. So I understand a little of what you are going through. Take life a day at a time atm - it takes time to come to terms with this but you’ll get there. The MS trust does some excellent free literature to inform others about it. Perhaps you could order some to help your family come to terms with what it all means. A healthy diet is invaluable to everyone not just MSers but it cannot cure MS, otherwise we would all be following it religiously, I promise. There is huge ignorance in the general population regarding MS and it’s not surprising. Why should everyone know all about it? I think it is up to us to pass the message on to family and friends, so that they can understand it better and ultimately support us. Remember we are always here to lend an ear and help if we can. The guys on here have been a lifeline to me and helped me cope with my dx - stick with us we hope to help you too. Teresa xx

Unrealistic not untrainable. Stupid predictive text!

Hi again,

I would just like to say that i’m so glad i’ve found you all. when it gets too much at home then now i know i can come here and pour it all out.

I will see if i can get some thing on it, which i can just leave around the house, you never know, one of them might read it and start to think differently.

I’ll tell you something though, since i’ve stopped my pills a month ago and been on this diet for two weeks i have lost 11 lbs in 4 weeks, i go weightwatchers tomorrow and i know i’ve lost again this week. I am overweight so this bit is good.

Lisa.

Well, it’s good to know that there is a positive. Good idea about the MS literature. Go for it! A lot of us are here most days, so come to see us as often as you want! Take care, Teresa xx

Hello Lisa

When my progressive symptoms were first becoming evident a lot of friends were convinced that more exercise would help improve my movement. There would be a distinctive look on their faces which sort of said “this is really basic advice but why can’t you see it, it’s obvious that you need to exercise more!” It illustrates how little those not affected actually understand. Even some physios think it is beneficial to push us in a session. Then they look with some puzzlement when I say “thanks that’s buggered me up for the rest of the day!” The best way I can describe it is running on a low battery. When your car battery is flat do you keep turning the engine so it goes even flatter?

Best wishes, Steve

Hi Steve, People thought more exercise would sort me out too. How wrong they were. My neurophysio is brilliant and knows that when I tell her I’ve had enough - I have to stop otherwise I can hardly walk the rest of the day! Teresa xx

I too have learnt that lesson the hard way!

There’s a big thing about exercise being good for MS… well as we’ve learnt… it ain’t so with PPMS!

What is the point of exercising and then having to spend the next few days in bed. As Steve says… it really £uc£s you up!!

Pat x

yeah i get that also. we’ve got a rowing machine and im supposed to go on it everyday for 2 to 3 mins, i get moaned at that im not doing it hard enough, i’ve got to try harder. thing is by the time im helped onto it, do it, then helped back off it (no way can do either on my own) i am k*****d. this i do even when we have already done the shopping or whatever and i’ve had enough already. if i then nod off i get told i’m lazy.

Lisa.

No Lisa it is one of the most common symptoms of MS - called fatigue. Loads of us get it and it is not just tiredness. It is way beyond that. You are not lazy at all - just ill! You definitely need to get your family reading all about MS. your life will be so much easier if you do! Teresa xx

Me again,

Went weight watchers tonight, i lost 3 and 1/2 lbs. Thats 14 st and 1/2 lb in 5 weeks.

Suppose theres something good about being on this diet.

Lisa

Wow! Very impressive. Well done you… but surely not 14 st… Think you mean 1 stone yes? Anyhow that’s amazing achievement!

Pat x