The MS Hug???

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The MS Hug???

Postby kizzydane » Fri Dec 09, 2011 4:05 am

Hi All

One of my very worst and most frightening symptoms (apart from the overwhelming tiredness & odd numbness) is the pain around my chest and upper abdomen. The first time it happened I ended up in A&E convinced I was having a heart attack! The spasming was coming in constant waves and was so bad I could hardly take a breathI

This lasted around a week before easing off and since then it comes & goes - particularly at night. It can also sometimes trigger spasms in my actual stomach - this feels like the beginning of a severe case of food poisoning but the rest of the accompanying symptoms of salmonella never come!

I regularly get an electric shock type pain that shoots around my middle - it lasts just a few seconds but is so severe that my whole body jerks up and I sometimes lose control of my bladder when it happens
I've had an ultrasound & endoscopy that were fine (apart from a small polyp in my gall bladder that they said would not cause these problems)

I was so convinced this was due to a thoracic disc prolapse - but have just been told by the spine doc that although there are 2 bulging they are not touching he spinal chord - he says it's neurological & has referred me to a neurologist to rule out MS

Does anyone else get this/had this or similar??? I'm so worried at the mo x :sad:
kizzydane
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Re: The MS Hug???

Postby JJT » Sat Dec 10, 2011 8:07 am

In the year before my (then) girlfriend was diagnosed with MS, she experienced the exact same symptoms. I must have rushed her to the ER a dozen times thinking that she was having a heart attack. She was finally correctly diagnosed with MS in September 2006 - 5 months before we got married. She did Betaserone for a year until she developed antibodies to interferon - Tysabri since then. But the MS Hug continued until she had the CCSVI procedure done 14 months ago - none since then.
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Re: The MS Hug???

Postby kizzydane » Sat Dec 10, 2011 9:43 am

Hi JJt! Thank you so much for responding!
It's a really horrible, frightening and painful sensation if what I'm experiencing is the MS Hug. I haven't had a diagnosis of anything yet so I'm still totally convinced it's my thoracic discs that are doing it - despite what the spinal consultant said!!!
I know that if I take all my symptoms together (including my eyesight problems etc) they seem to fit MS - but if taken individually several of them point to back problems!
I'm hoping the neurologist will shed some light on it one way or another.
Can I ask what is the CCVI procedure and did your wife have other symptoms? How is she doing?
kizzydane
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Re: The MS Hug???

Postby JJT » Sat Jan 07, 2012 9:54 pm

Sorry so slow to respond - we don't check back often enough to all these boards to which we subscribe. I'm sure that, by now, you've done a web search on CCSVI and you understand what it is. LL (Love of my Life) has had multiple symptoms in the 5 years since she was diagnosed. She tried Betaserone - now on Tysabri (52nd infusion). Nothing gave her the results we had hoped for. CCSVI treatment was the most successful treatment we had - but, unfortunately, it lasted only a year symptom free. We're thinking about doing it again.
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Re: The MS Hug???

Postby milesap » Sun Jan 08, 2012 1:13 pm

Go to American Access Care Dr Sclafani on this site or their web site
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Re: The MS Hug???

Postby kizzydane » Sun Jan 08, 2012 1:30 pm

Thank you x
That's amazing! I'm in the UK though so am searching for an answer here x will chase it up
kizzydane
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Re: The MS Hug???

Postby Joanne60 » Mon Jan 09, 2012 1:56 am

The MS? hug is a very common symptom of Lyme Disease too. It is as you say very scary although another scary symptom of mine was swallowing problems. I had very long term oral antibiotics for my Chronic Lyme Disease and have made an amazing recovery. Sadly the controversy over diagnosis and treatment means so many patients will never realise that their MS could actually be Lyme Disease and that long term antibiotics could help them. For further information see Lyme Disease Action or join Eurolyme chat line.
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