UK and Ireland SMS Support Group

The Official UK and Ireland Support Group and Charity
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 Post subject: Re: Hello and welcome to the new Forum!
PostPosted: Mon Sep 14, 2015 8:25 am 
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Joined: Sun Sep 13, 2015 9:34 pm
Posts: 1
Hello! Just to say I've joined and am looking forward to meet new folk and talking about their SPS. I hope i can navigate the site OK.
I have cerebellar ataxia with my SPS - long story- but thats for later.
Hello Liz and Dave - I think I can spot you across the room!


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 Post subject: Re: Hello and welcome to the new Forum!
PostPosted: Tue Nov 24, 2015 9:45 pm 
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Joined: Wed Nov 04, 2015 1:55 am
Posts: 2
Hi, I am Fred and was just recently Diagnosed with SPS. I am currently receiving 3 day rounds of IVIG at an Infusion Center. Had first 3 day round last week and my next two are scheduled in December and January, then they will re-evaluate. I am also taking Baclofen 20mg Three times daily and Lyrica 75mg twice daily. My symptoms blossomed over a 7 moth period and I am still reeling from the sudden decline. I live in Lockhart, Texas USA


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 Post subject: Re: Hello and welcome to the new Forum!
PostPosted: Sat Jan 23, 2016 5:14 am 
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Joined: Wed Feb 23, 2011 9:30 am
Posts: 9
Hi all. I'm making a conscious decision to participate in this website.
I'm lucky , blessed in many ways but can see how this network is invaluable
TY for ur tireless work
Ali x


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 Post subject: Re: Hello and welcome to the new Forum!
PostPosted: Sat Feb 27, 2016 3:05 am 
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Joined: Sat Feb 27, 2016 2:54 am
Posts: 2
Location: Georgia, United States
Hello! So thankful to Liz for sharing this forum with me today. I have been searching for my SPS friends since 2010 (when this forum was started), and it took me this long to find you all. Looking forward to getting to know you.


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 Post subject: Re: Hello and welcome to the new Forum!
PostPosted: Sun Apr 24, 2016 7:25 am 
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Joined: Sun Apr 24, 2016 6:47 am
Posts: 1
Hi

I'm Elaine, from Sydney, Australia. I've been insidiously and progressively ill for many years but only heard of SPS for the first time a few weeks ago when I tested positive to a GAD65 test. I can't tell you a number because the report just lists as Detected or Not Detected.

The neurologist repeated the blood test and I don't have the second result back yet. The lab ran the wrong test ... GAD instead of GAD65. I'm negative to GAD but positive to GAD65 and haven't a clue whether that means that SPS is not so likely for me.

I do have muscle issues. My thighs, calves and gluteus muscles are very hard and painful. One calve keeps doing these funny contractions or outright cramps. My lower spine is increasingly stiff, and my facial muscles are involved. Who needs botox when nature delivers immobility. I've lost a few fine lines! I frequently can't talk or talk properly because I don't have enough movement, which also frequently affects my ability to smile, laugh and cough. Yes, some dramatic choking episodes along the way.

I'm also positive to Borrelia but don't know if that's a true-positive and infection has somehow caused this, or the other way around and a false-positive somehow induced by immune issues.

I have mildly elevated ACE which probably comes from diaphragm restriction and get very elevated calcitriol at times (with this combination making Sarcoidosis seem likely for a while).

I'm P-ANCA positive, too, these days but don't know if I have a mild vasculitis or if that means something or nothing.

I burn at times, head to toe, and have painful arthralgia ... don't know if that can fit into SPS or is Borrelia, ANCA-related or something else.

I have thyroid issues but more of a sick thyroid thing than autoimmune. I don't convert well to T3.

These recent blood tests also showed I have low serum protein and low gamma globulin. Don't know where that fits in.

So, I've written an essay as 'Hi'. Just floating here, trying to learn, while it's figured out whether I'm one of you or not.

Cheers!


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 Post subject: Re: Hello and welcome to the new Forum!
PostPosted: Thu Mar 16, 2017 4:50 am 
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Joined: Thu Mar 16, 2017 4:37 am
Posts: 1
Hi, I'm Basia and live in Brooklyn. I have been in treatment - IVIG and mandatory Diazepam - for about 2 years and am doing ok. I'm also in remission from CML.

I was misdiagnosed for a year by a pretty awful doctor who wouldn't listen to my new symptoms and eventually of course I had several bad falls.

I am currently looking for a job, as freelance is too stressful now, but am hiding my SPS and pretending my cane is for a running injury. I am positive in my outlook but do have crappy days, so I think I need to stop thinking I can deal with this on my own. Many friends and some colleagues know and are supportive. I have a family of cats I love, I do rescue, and live alone.

This week for the first time ever, I've seriously started thinking about moving back to the UK, but I have no idea how many treatment centers there are and where they are. This being NYC, of course I get a home nurse for my infusion, but it's still vile. I of course pay health insurance thus my now looking for a secure job.

I am originally from Nottm and have family there. A friend in Scarborough has offered me a place to live.

I am about to read some posts now,

kind regards,

Basia


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