Forum

ppms

Hi ive just been told by my nuro after having 6 monthly infusions of tysabri that its not helping, and rather than carry on what with the risks of contracting pml she thinks i have ppms. so what am i to expect now....

Karen

There are no approved treatments for PPMS, so probably nothing from your Neuro. However, you might want to check out ldn and see if you think it can help.

www.ldnresearchtrust.org

Welcome Karen to this VERY select club coolWe all struggle on with the Progressive MS diagnosis (if that's how you spell it) some days are better than others but if I could wish anything for you it would be a positive attitudetrophy take care, M

Hi Karen, welcome to the board. Remember that ppms is different for everyone. Symptoms can vary for everyone and even your own symptoms can come and go. Just because you get one symptom doesn't mean it will last forever. It's really a case of getting to know your own ppms. It takes time but you get to know it... what you can do, what makes things worse, what helps. 

So nobody can really tell you what to expect. Try to take a 'one day at a time' approach. 

You will, before long, become an expert on your own MS. 

Also most important to remember, life does go on! This board is great for support and friendship... to know you are not on your own. 

Take care and come on here to ask any questions you have. We are not a big group but we know more about ppms than any of the experts!

Pat x

Don't know why my last post came up as 'anon'.... hahahahaha.... I don't feel very anon... 

Pat x confused

Not 'anon' just brilliant trophy

Went on my yearly Neuro Appointment earlier this week.

Luckily I am fairly stable in progression. For the last couple of years I have been turning up for the appointment and having the same chat. The Neuro decided to discharge me which is good to hear in some respects. I was told liase with the MS Nurse if here were any problems in the future and she can refer you back if there is a need for any clinical intervention.

However thinking about it I considered that in the World of Statistics if whoever collects information to allocate resources within the NHS contacts the Neurology Department and asks a question 'how many people are you providing treatment for with MS?' then 'how many of those people are classified as PPMS?' The answers that come back will indicate that there isnt much of a problem with PPMS. With the resultant lack of input into research for the treatment of PPMS.

In effect I just get a niggling feeling that I am being 'swept under the carpet'.

Alan

Hi everyone

 

I was diagnosed with ppms last july and although still working my back hurts daily and my balance is never good.

I find that i keep putting on weight because of the tablets, i have been changed from gabbapentin to naproxen, and am on pregabalin for my back, anybody else have the weight problem and any suggestions?

Karen xx

letdown

 

 

 

 

 

Thanks Alan

It looks like its worth a try and to lose weight as well.

I dont tend to eat any red meat or pastry ,

It sounds like you are doing well anyway.

Thank you.

Karen

 

 

Hi Everyone

I have had PPMS for about 30 months and since that time my weight has risen by 30 pounds.  I have never been a big eater and do not eat pastries or a lot of red meat.  I do more exercise but still the weight seems to slowly increase.  I went to my doctors because I was getting depressed about it but she just pushed it under the table.  I have always been slim in the past and so I do get very down about it.  One time I had to go into hospital for kidney stones and did not eat for about four days and when I got on the scales I had put on 2 pounds!!  My daughter says if you put weight whether you eat or not why don't I just eat what I want and hope for the best.  This seems like a brill idea but I dare not try it.

I will definitely give the Swank Diet a go I have nothing to lose (except weight of course).

If there is anybody out there who thinks they have any other cures please let us know.

Take care everybody.

Sue

Hi Sue, weight is a terrible problem when exercise is so difficult. If you are on any of the pain drugs (Amitriptyline or Gabapentin for instance) they pile on the pounds.

A couple of tips that might help... low fat ready meals (Healthy Choice etc) are loaded with sugar to give them some taste. Many experts think that sugar in our diets is the reason why so many people have got so fat over the past 40 years (when low fat diets came in), so you are actually better off avoiding the low fat alternatives. 

The other thing I do to try and keep the weight off (not very successfully!) is avoid buying biscuits, cake etc. If I'm really desparate for something sweet I have bread and jam. Biscuits etc have a cheap sugar substitute in them called corn syrup which is much much more fattening than real sugar. Sometimes called corn fructose, it should be avoided at all cost.

I have my own theory that we also put on weight because of fatigue... our bodies crave food thinking it will give us energy. Bananas, although fattening to a degree, will provide a certain amount of energy (packed with good stuff like potassium) and loads healther than any so called 'healthy snacks'.

Anyway, it is a bit like fighting a losing battle, but my thinking is if you are going to be overweight (which I am) it is still best to eat as healthy as possible.

Good luck with the Swank... lots of MSers swear by it.

Pat x happy2

 

 

There are no approved treatments for PPMS. I think it's enough to know the MS society if we wan't to know the developments in the world,

I've opted not to take anything for 2 years (this was the last Endoxan (french) but it did nothing). I atends advances in research (for 10 years already !).
Careful we are all different with our MS

I'am severely disabled but the life don't stop here,

Watch my WEB TV on YOUTUBE and reseaxch MrKINKIN93 or http://www.youtube.com/user/MrKINKIN93?feature=mhee

because we are technically well supported if things go wrong