It's beginning to look a lot like Christmas......

[LE lover]

Thanks PPC, i have everything crossed for you that this treatment will be a success. Its good to know you're being monitored so closely. Good luck with it all and keep us posted .

Sorry. BM i didn't see your post, i hope your DD continues to stay stable.

Hugs to you both x

 

[Disenchanted]

Thanks for that info PPC - have passed it on. Long may it continue to work successfully for you.

Likewise BM.

 

[petpixie]

All the very best of luck with your treatment Sue xx

 

[sublime]

Oh gosh, Sue, I'm keeping everything crossed for you. I hope all goes well on Friday and continues to go well for a very, very long time to come.

 

[Just Beauty Direct]

Me too Sue - a lot to be grateful for but a real worry for you too

 

[Sazza]

Thanks LE Lover and Waterlily I don't tend to say much about my MS but I started a drug treatment called Tysabri last May and it is an infusion every 4 weeks in a day unit at Kingston Hospital. It's a serious drug that can't be given by the hospital staff so a specialist nurse from the drug company comes to the hospital to do it and we are monitored very carefully throughtout the process and blood is taken every time to see if there are any detrimental changes to liver or kidney function and whatever else they test for. It's quite social really cos it's the same small group of 7 who attend and we have a good old chat and a giggle. Tysabri is considered to be the most effective treatment currently available to stop relapses and so hopefully halt progression and I feel very lucky to be on it as it's very expensive but it does carry a risk of PMLwhich is a rare potentially fatal brain infection, but it's a very small risk in the first 2 years and after that it does increase so we have to sign consent forms again to continue with the treatment. There is a blood test that we all had to have to show if we carry the JCV virus that causes PML and unfortunately I tested positive for antibodies but it's still a very small risk that I am willing to take and I will have an MRI scan yearly (or sooner if we have any concerns) to look for changes in the brain. After the two years of infusions are up I will sit down with my Neuro to assess the benefits and risk factors again and hopefully if it is working well and I am stable I won't hesitate to continue with it. I know that there are a few fms with MS and it's surprising how many people know someone with it so I have provided links in blue for anyone who is interested in finding out more about the treatment.

Good luck PPC, hope it continues to work well for you!!!

I will give my sister a note of the name as she is a volunteer and most the people in her group she helps have MS.

 

[Flying Pigs]

Fingers crossed for you Sue. Best wishes to all forumites who have the same issues as Sue, or whose family/ friends have. We have got several on DH 's side.

 

[madmax]

Thanks LE Lover and Waterlily I don't tend to say much about my MS but I started a drug treatment called Tysabri last May and it is an infusion every 4 weeks in a day unit at Kingston Hospital. It's a serious drug that can't be given by the hospital staff so a specialist nurse from the drug company comes to the hospital to do it and we are monitored very carefully throughtout the process and blood is taken every time to see if there are any detrimental changes to liver or kidney function and whatever else they test for. It's quite social really cos it's the same small group of 7 who attend and we have a good old chat and a giggle. Tysabri is considered to be the most effective treatment currently available to stop relapses and so hopefully halt progression and I feel very lucky to be on it as it's very expensive but it does carry a risk of PMLwhich is a rare potentially fatal brain infection, but it's a very small risk in the first 2 years and after that it does increase so we have to sign consent forms again to continue with the treatment. There is a blood test that we all had to have to show if we carry the JCV virus that causes PML and unfortunately I tested positive for antibodies but it's still a very small risk that I am willing to take and I will have an MRI scan yearly (or sooner if we have any concerns) to look for changes in the brain. After the two years of infusions are up I will sit down with my Neuro to assess the benefits and risk factors again and hopefully if it is working well and I am stable I won't hesitate to continue with it. I know that there are a few fms with MS and it's surprising how many people know someone with it so I have provided links in blue for anyone who is interested in finding out more about the treatment.

This sound very similar to the latest treatment I am having for my R.A and Fibro.
I also had to sign the PLM consent form so if I start to lose the plot you will all know what has gone wrong with me.
I have mine slightly differently I have 2 infusions (each one takes at least 8 hours) two weeks apart every 6 months, and have to take methotrexate weekly.
So far it is doing what I need it to, so that as long as I am carfull and don't get to tired I can live a "normal life".
Good luck with your on going treatment and I hope you can get to it on Friday as missing a treatment is always disappointing.
So far we haven't had any snow in Cornwall just, yet more rain.
We really don't need any more rain, every where is muddy and slippy which makes walking the dogs almost impossible unless you go to the beach which really isn't a hardship.

 

[Pinkpussycat]

PML (Progressive multifocal leukoencephalopathy)
Progressive multifocal leukoencephalopathy (PML) is rare viral disease of the brain. Susceptibility to infection has been identified as a potential side effect of treatment with natalizumab (Tysabri). PML is caused by a mutation of a virus called the JC virus, which is normally kept under control by the immune system. If the immune system is severely affected, for instance by an immunosuppressive drug such as natalizumab, the virus can cause progressive damage and inflammation to the white matter of the brain.

Apparently up to half the population have been exposed to the JC virus and there are a number of factors/drugs that can trigger it's mutation into PML including certain drugs given for the treatment of HIV/AIDS and many autoimmune diseases such as yours MM but at least 'we' are monitored very carefully. Of course if a person tests negative for JCV antibodies there is *no risk* of PML but that doesn't mean they won't be exposed to the virus in the future and then not be aware of the risk of PML so in a funny way I'm glad I tested positive and can be monitored accordingly.

 

[Pinkpussycat]

Anyway back to the weather....no snow overnight and it's bright and sunny in London this morning and a bit warmer than the last few days. My trusty barometer which is never wrong shows rain coming so if it turns colder again maybe we will get some snow then??

 

[Lilo Lil]

Thank you for explaining so well in your posts exactly what is what with regard to all the medical aspects. Reading that fifty per cent of the peeps have been exposed to that virus explains a lot of strange behaviour we read about these days (LOL).

Returning to the weather here on the Essex/Suffolk/Cambridgeshire borders we had a good flurry yesterday, nothing so far today but it is buddy cold.

 

[Pinkpussycat]

Well I turned my back for 5 minutes and the sun has gone awol and the sky has that dreary colour and I think it's getting colder....:bandit:

 

[Milly]

We woke up to a heavy frost this morning but now the sun is out and melted away the frost so all good here in the west country and blue sky

 

[BusyMum]

Brrrrr! Snowing again! Himself came in mid-afternoon and told me we'd best go up Tesco and not wait till tomorrow - owing to a heavy cold I've not been out for a fortnight except for doc & dentist - we called at the garage on the way back and so we're now "snapped up" and "fuelled up" and hoping for the best!

PPC hope it's ok your end and not going to bugger up your appt tomorrow - best of luck!

 

[Itchy]

No snow here in the West of Ireland thank goodness and I don't want any either! When it snows or freezes, we lose our water in the house as the pipes freeze from the road to the house. Its very chilly though.

Sue, good luck with the hospital tomorrow. Let us know how you get on. x

 

[minim]

OK here at the moment but tomorrow could be the day.
21 has got to be in uni early for an exam so I just hope the nice man got the forecast wrong.

Good luck Sue. I hope nothing interferes with your appointment.

Tuck yourself up nice and warm Carol & stay inside.

Itchy - watch out for freezing sheep taking refuge in your garden lol.

 

[Itchy]

OK here at the moment but tomorrow could be the day.
21 has got to be in uni early for an exam so I just hope the nice man got the forecast wrong.

Good luck Sue. I hope nothing interferes with your appointment.

Tuck yourself up nice and warm Carol & stay inside.

Itchy - watch out for freezing sheep taking refuge in your garden lol.

Ha ha. That flippin sheep has been in and out of the garden like a yo yo all week. The farmer did a job on the wall (not good enough obviously). Then when it has had enough of our grass, it goes for a stroll down the road, comes back into our garden again and through the wall. I am just waiting for her to bring her relatives in as well.

 

[minim]

Keep shouting "Lamb chops!" & it might just spook her.

 

[sublime]

My friend and I have been emailing each other all day [she lives halfway up a Welsh mountain] with details of what we should lay in as emergency supplies.

We tried to start sensibly with milk and bread and stuff but our list quickly became a] emergency wine b] emergency chocolate c] emergency DVDs.
So that's all right then.

Anyway, we have a [sirens blare, lights flash] Red Alert for Heavy-Heavy-Oooh-Look-at-That-it's-Bucketing-Down snow for South Wales. It's very rare, apparently!

 

[Tinkerbelle]

Isn't it mint sauce you're supposed to yell to frighten sheep.

Good luck tomorrow PPC. If the weather peeps are right, and that's a big IF usually, we could all be in for a healthy dollop of snow tomorrow. I'm stocked up with supplies though so if it happens so be it. Just not tonight please, I'm off up the pub for my tea!!