It's all Greek to me.

Everyday living
1

Just joined up and wanted to say a big hi to you all and connect to fellow’s in similar circumstances. I trust your are all as well as can be expexted and comfortable.

Me

over 20 years living with this had pretty much all the treatments available just finished a course of tysabri which didnt agree with me took the risk as i tested positive for the Jc virus.

My Neuro said i was now in the secondary progressive stage of the disease and not much in the way of treatment, after this, she wanted to give me one last go at tysabri treatment.

Not spoken to any fellow m.s persons about this in over 10 years.

dont talk about it and how it impacts my life but now the time has come to reach out into this virtual world. The people i do tell find it hard to believe.as i led a very active life up until slowing a little recently.

wanted to ask you all for some advice some of the recent stuff going on my nurse and neuro put it down to the m.s.

Do your legs and feet go numb when you sit down drive? and feel better while lying down or standing up?or moving?

drugs offered

pregabalin,baclofen,both the triptyline’s,gagapentin, and now the latest duloxetine.(all views wellcome on this 1 not tried it yet)

Is anyone else taking provigil? I love the stuff.

Steroids when im relapsing they are great helps me feel alive and helps. although now they say im not gonna relapse that much just a gradual decline.

I dont take the drugs that slow me down however now i feel i may just need to.

Sorry for the rambling.

All views and advice gratefully accepted.

All the best

P.

2

hello P

the neuropathic painkillers you mention all have side effects.

at the start of my ms i was taking 3 x 300g of gabapentin.

gradually cut it down to 1 x 300g a day.

then i got a massive session of the ms hug (or death grip, describes it more accurately) i took 4 x 300g until it started to ease.

then i was so bloated. i felt like i was full of wind so started the movicol (which i dislike intensely) and milk of magnesia.

i remembered then the reason i’d cut back in the first place.

so it turns out to be about making compromises - give in to pain and take the meds or resist the meds?

i have gabapentin, amitryptiline and tizanidine.

gabapentin plays havoc with my stomach. amitriptyline makes me sleepy so its good at night.

tizanidine eases the stiffness in my legs.

i’d love to try provigil or modafinil to give me that extra energy

also P have you tried hyperbarric oxygen therapy?

usually available at the ms therapy centres.

carole x

3

Hi P,

I do not think any of the drugs you’ve been offered will help with numbness.

Numbness is caused by nerve signals being unable to get through. Although you can take drugs to dampen down unwanted nerve signals which ARE getting through (i.e. ones causing pain), I don’t think there is anything you can take that will make a signal get through, that can’t. If it was possible to do that, MS would be solved!

So if numbness is your only or main reason for considering these drugs, I think you would be disappointed. However, if they are for other symptoms, they may be worth a try. I have found Baclofen brilliant for spasticity - it does nothing at all for numbness, but isn’t supposed to, that I know of.

Haven’t tried any of the others.

Tina

x