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Dexter2127
New Member


Date Joined Jun 2012
Total Posts : 1
   Posted 6/23/2012 5:31 PM (GMT -6)   
Hi all , I am a new member of living well. I just thought I would introduce myself, I am 52 years young and I live in Canada. I was diagnosed with ms 4 years ago, after many problems. My original attack was when I was 27 and had no relapses that I am aware until my late 40's when things started to go very wrong. I have been diagnosed with secondary progressive ms, so unfortunately there are no treatments that I am aware of,( open to any suggestions someone may have) currently I have what is known as the ms hug!!!! I am in constant pain but it gets worse as the day progresses. By night time I can do very little. I am taking many pain meds, which do help, but it is only some help! If any one is aware of the ms hug and have any suggestions that might help please send me your thoughts. Thanks for listening and I hope to hear from you, Dexter

Getting there
Regular Member


Date Joined Jan 2008
Total Posts : 105
   Posted 6/24/2012 9:12 AM (GMT -6)   
Hi Dexter, I don't have any answer about the MS hug but want to ask you a few things. I will be 52 soon and live in Canada also. I just had a week in the hospital where they are querying MS. Some MRIs came back showing demylinating. At first and sometimes now I get very scared. I find it interesting that your original attack was at 27. How did you know it was MS then? I am having symptoms similar to when I had a nervous breakdown at age 30 and has had nervous symptoms since childhood. I chalked them up to anxiety and depression.

How did they diagnose you 4 years ago? I will look up what secondary progressive MS is. What type of pains do you have? My main pain is in my lower back and sometimes my leg as I have degenerative disk disease and stenosis of the lumbar sacral area. I went into the hospital due to awful numbness in my feet and buttocks. 2 weeks later it is no different and I was not treated. My neurologist appointment is not until September which seems years away with these symptoms. I hope you will get answers to your question. If I am able to contact you I can help you in getting your question answered.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 6/24/2012 8:10 PM (GMT -6)   
Novantrone is considered a treatment for SPMS. It does have a life time limit but it's considered decently effective. Also, some SPMSers have satisfactory results from copaxone. I know someone who is SPMS responded well to copaxone.

I do hope you find something to help with the hug. Best of luck!
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Singingsupernurse
Regular Member


Date Joined May 2012
Total Posts : 118
   Posted 7/2/2012 10:24 AM (GMT -6)   
do you guys in Canada have Tysabri? It is both good and bad( very bad secondary disease can happen, not always). I know about the MS hug...I don't exprence it myself but it feels like a band is squeezing you (part of the demylination).
Those that do not learn from history are doomed to repeat it

Singingsupernurse
Regular Member


Date Joined May 2012
Total Posts : 118
   Posted 7/2/2012 10:27 AM (GMT -6)   
Sorry: there are meds you can take for fatigue, don't do anything to slow the disease process like copaxone, however does give me a boost( i'm on ritalin LA and provigil) Have they tried the high dose IV steriods? Maybe that would help with the hug...Please take care.
Those that do not learn from history are doomed to repeat it

~SimplyUs~
Regular Member


Date Joined Aug 2012
Total Posts : 205
   Posted 8/25/2012 9:36 PM (GMT -6)   
Try librax. It helps me some and seems to stop the severe attacks. Montel Williams says medicinal cannibis.

and I body position to relieve as much pressure off the trunk of body as possible-laying down not being an option.

how long do yours last?

Jaikant Shardul
New Member


Date Joined Sep 2012
Total Posts : 4
   Posted 10/6/2012 5:10 AM (GMT -6)   
@Dexter2127,
You can get well. If you take proper care for it.

nan47
New Member


Date Joined May 2014
Total Posts : 1
   Posted 5/22/2014 11:33 PM (GMT -6)   
Try LDN...low dose Naltrexone...been taking it for several months now . My symptoms have lessoned and I do believe the LDN is helping. I've read a lot of opinions about how it has helped and the cost is low, and no side effects
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