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Dx PPMS

New to the forum so just saying hi. I was dx with ppms last July and sort of left to get on with it a bit. The only meds I take are 40mg of baclofen a day for spasisity in my legs. Anybody take anything besides that ? Thanks

Greeting to the forum to take with a pinch of salt.

I was advised to take Baclofen. It made me much worse. There is no cure for any form of MS.

I was Dx with PPMS years ago & prescribed Baclofen. It’s pot luck medication by the so called experts I’m afraid.

Improving the immune system is the the path I chose. Healthy diet & moderate exercise. Avoiding stress creators & getting on with life as is. Got my driving licence returned & seeing people I haven’t seen for years.

The people on 50k a year, try & tell you you’re crazy. I’m just a realist. Getting wiser & wiser who to avoid.

Best of luck to you. You’ll need it.

Terry

Hi & welcome

I also take 50mg of amitriptyline at night - stops twitches etc. so helps me sleep.

4 x 300mg gabapentin with my 4 x 10mg of baclofen for nerve pain/spasticity etc.

I also take betmiga for my bladder.

Hope you find some useful support here

Sonia x

Hello there. I only take10mg x 2 daily. Controls nighttime twitching and seems to relax me so I sleep better. It eases the tightness in my knees during the day. Not sure it actually does anything for my spasticity.

I take vit d too. I started cbd oil last month but didn’t take it abroad with me when I went away last month. I haven’t given it a proper trial in order to comment.

On my second pint of water & a bunch of Blueberries. Followed by a batch of exercises.

Walnuts & grapes will be for lunch & a sit in the sun.

Followed by a grilled fish & rice for dinner. Then some more exercises to build muscle.

There’s so many theories on what to do & a lynch mob of experts. Drawing up their version, of what’s right.

Do what feels right to you & invest in a snazzy food blender, for shakes. It helps break foods down for you. So they reach the parts a poor digestive system can’t manage.

Terry

Hi all, because my MS affects my right foot in the main I’m thinking of getting an automatic car with hand controls but have no idea where to start or even the cost to get a car modified. Does anyone drive a car like this? Thanks

[quote=“PUDDLE”]

Greeting to the forum to take with a pinch of salt.

I was advised to take Baclofen. It made me much worse. There is no cure for any form of MS.

I was Dx with PPMS years ago & prescribed Baclofen. It’s pot luck medication by the so called experts I’m afraid.

Improving the immune system is the the path I chose. Healthy diet & moderate exercise. Avoiding stress creators & getting on with life as is. Got my driving licence returned & seeing people I haven’t seen for years.

The people on 50k a year, try & tell you you’re crazy. I’m just a realist. Getting wiser & wiser who to avoid.

Best of luck to you. You’ll need it.

Terry wink

[/quote] Hi Terry I take a heap off meds not to try and cure myself but hel’ me live with ppms the pain the spasms

The spasticity the headaches the falls and the nonsense I hear and read about ms .

You enjoy yourself with your electric mountain bike and try not to hurt yourself

The mobility skeme has centres where they show you the ropes. Asking someone who has never driven before, doesn’t help. I keep being advized to drive an automatic. If we believe the hype, we’ll all be catching Taxis in autonomus cars soon anyway. Believe that & get an hot air balloon instead. You know what you can & allowed to do. Breathing isn’t illegal yet.

Unzy,

Are you in receipt of DLA or PIP ?

Either of these allowances include a mobility component …as long as you qualify for that kind of help (…distance you can walk etc.)

Regards,

Dom

Hi Unzy,

Welcome to our lovely little forum…some really lovely people on here that are a god send when things are rough!

take care

Nina x