New to the PPMS forum!!

Hi Bridget and Mags!!! Two lovely new members to the gang! Welcome to you both!

I’m Pat, aged 59, dx ppms nearly 5 years ago.

You know you can come on here and ask questions, have a rant, a cry, a good laugh… whatever. We are all here for each other. It takes a while to get your head round PPMS… so great to have the support on here.

Mags sorry to hear about the blocked arteries. There was a lot of fuss a couple of years ago after an Italian doctor did some research that concluded a lot of MS is caused by blocks in arteries to the brain.

Lots of people went to eastern Europe and paid a lot to have a surgery called CCSVI. Some people said it really helped their symptoms but for some it didn’t help or made things worse. Anyway there has now been more research (inc MS Society) to show that for most people with MS it won’t help at all. Lots of people wasted money on the treatment.

However what you have might be the same condition… if so then CCSVI could help (if it’s the same thing… I’m guessing this but it sounds the same). Might be worth having a google and reading about it. One word of warning… the whole CCSVI thing was (well still is) a massive thing in the MS world and created lots of tension between people who believed in it and people that didn’t.

Looking forward to seeing you both on here… yes Bridget it can be very scary… but we help each other out on here and you will always be among friends on here.

Pat xxx

Hi Anne,

sorry for the late reply, i don’t come on here as much as i should do

All i can say is welcome to the gang and like the others have said we are all here for you.

Have you consdered acupuncture, it may ease the pain somewhat, as you are allergic to the drugs it may

give you some comfort.

Take care and keep on posting,

Take care

Mark xx

hi all sorry new to this dont know if im doing this right would like to ask a few questions

1 my work are looking at ill health pension but occupational health nurse got my medical records from my doctor and he hasnt given them enough information for the pension trustees any help what to do next.

2 i have been off work for 1 year now i have not had a visit from personnel and now she wants me to go to my work for a meeting i would like to take my husband with me but they are telling me he cant come any help please thanks xxx

Hi Linda and welcome to the gang

You posted on the end of another post hon… everyone does at first… but next time hit ‘new thread’ at the top to post a new thread. This is a lovely supportive group and you are among friends here.

As a disabled person you are protected under the Disabilities Equalites Act… part of which is about employment. Your employer has to, by law, make ‘reasonable adjustments’ so you can continue doing your job ie… less hours, less stressful position… whatever… unless it is absolutely impossible.

This link explains it:

You really need some legal advice and someone legal to represent you at the meeting with your employer, to make sure you get a fair deal and that they are not breaking the law.

Contact Citizens Advice Bureau (CAB) in your area. You can find them on the internet, in local phone book or ask at the library. Suggest you do it ASAP Linda and don’t go to a meeting with employer until you have seen them.

Good luck and let us know how you got on, (by the way, I also think they can’t refuse to have your husband present. You are entitled to have someone to represent you… but CAB will be able to advise you on that too).

Pat x

Hello all

I’m male and 50 years old and was dx ppms in Dec 09. Since then it has progressed to me needing 2 crutches or a wheelchair to get around. I’m one of the people that wasted thousands on ccsvi in Poland in January 2011. It didn’t do anything for me at all but having said that if it were to happen again I would go for it because when you are desperate you will try anything and I don’t regret it.

I tried ldn back a couple of years ago, it was when I was still able to walk unaided but it didn’t do anything for me but now that I’m advanced a bit I’m wondering would it help me now.

Ive been reading a lot of the posts here and I just want to say that you have to take it one day at a time and try to stay positive it does make it a bit easier.


Hi Paddy, thanks for introducing yourself.

I’m sorry you wasted money on ccsvi. Lots of people did and it did sound like the new breakthrough. Ah well… at least you tried.

Yes I would think it might be worth giving LDN another go. I’m not on it but my ppms is progressing very slowly. If things speed up I’ll give it a try.

I take statin for high cholesterol and think it just possible that it might be why mine slowed down. Lots of research going into statin and MS at moment. Then again it might just be coincidence.

Nice to see you on here. We are a small but perfectly formed gang!!!

Pat x