Hi all,
This is my first post on here, I was wandering if there are any uk members. I will tell my story tomorrow when I have more time.
From Martin

Ive met many members from the UK in one place or another around here. I'm fairly new at NT myself, though, & don't know any way to track down the Brits other than just thru synchronicity & chance. I'll try to check that out before you come back.

Don't forget to come back!

Hi everyone,

I am so glad I have found this website as I feel like the only one suffering from this disease.

I was diagnosed about a year ago. I was treated with IvIg but became allergic to it and my hands started to peel, with treatment they got better but not back to normal. Six weeks later I had plasma exchange which was a five day course and felt 75% better but again this didn't last for long, approximately eight weeks.

I have since deteriorated and have very sore fingertips and toes and very poor walking ability and balance. I went to see my consultant and asked him to explain in layman terms what was happening and he printed off a page from Wikipedia and just said I will give you more information when you come into hospital. I am waiting for the phone to ring to say to come in and have Rituximab.

I will keep you up-dated .Thanks for listening
Martin

Wikipedia? Are you serious?

Well, yeah, I believe it. I have a possible parathyroid prob & as I began to ask questions doc shakes his head as he leans in toward me, arms crossing & palms open, facing me. When I stopped talking in disbelief , he scribbled something on a scrap of paper, tossed it at me, & directed me to, "google that!" as the exited, doorway left.

I checked up on locating other Brits on the board & it's not set up for that. How bout go on one of the larger forums, e.g. MS, or the social forum, & just inquire? I think the word would get out that there was a Brit looking for countrymen.

martinbrace,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hi Martin

Big John here from Hampshire UK. How are you getting along?

My consultant hails from Southampton General hospital a Dr Haider Katifi. This is where the Souths "center of excellence" is - allegedly - and it is where I have received two ivig infusions, strangely a year apart. I benefit from these for nearly 3 months then drop back to slightly below where I was before. Southampton do not seem to go for plasma exchange. They think that the next treatment for me should be Rituximab plus Cyclophosphamide as if treating for Lymphoma (which I do not have). Not sure about that having read the side effects but that is where I am today and still working part time even if I cannot walk a straight line in the dark and have to be careful when I close my eyes in the shower that I do not fall over.

I have an appointment to see the Hematologist tomorrow! last time he mentioned another bone marrow sample and a scan neither of which has happened yet.

Best wishes for your treatment,
Big John

Big John,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here, you will see we are supportive and relaxing place. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hi John,
Sorry to say this but it`s nice to meet another sufferer from the U.K, As I was wondering if I was the only one suffering with this problem.

Since my last post I have had another plasma exchange and again it lasted 8 weeks or so. I can walk about 3 steps before falling down so I use a wheelchair or zimmer frame. My consultant is a Mr Munro but one of his registrars a Dr Alex Faulkes has been my main man. He applied to the PCT for funding for rituximab but is was turned down due to the disease not being rare enough.He totally disagreed with their decision and appealed. This time we was approved and I am just waiting for a telephone call to say come in to hospital.
I have just received a letter from my consultant to my Doctor saying rituximab can last between 6 months to 3 years but on average it lasts 1 year.
I am not looking forward to the treatment but needs must.
A little bit about myself.
I am a 44 year old male, I was working full-time as a support worker with people with Huntington Disease until April but I have deteriorated a lot since then so I am unable to work at the moment.I live in Kent and the hospital I use is the Kent and Canterbury.
If you want you can contact me here or on Facebook.
Hope you are keeping well,
Martin Brace

Hi Martin

It has been some time since the last post and I was wondering how you are?
My treatment is half way through, iv Rituximab and Cyclophosphamide for two days with five days of Prednisilone tablets. Then three weeks off and it starts again so for me just 11 weeks to go. So far so good, a bit of tingling in the arms and hands on day 7 and pins and needles but it soon eases after another day or so DV. Main problems so far is with the anti sickness and anti nausea tablets which adversely affected my digestion but were optional, I am much better off without them.

Needless to say that I am keeping well away from folk as my immune system is compromised and taking all other recommended precautions because, being retired, I can.

How about you then, your condition was much more rapid onset than mine, I do hope that you got the funding and the Rituximab helped.

Best wishes

John

Does anyone know the significance of high titers? My neuro didn't give me a number, just said they were very high. He was surprised that my NCV was normal and did a skin biopsy. No results yet.
Anyone with Sjogren's and Anti-mag pn?