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Multiple Sclerosis
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Posted 6/23/2012 11:31 PM (GMT 0)
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
Posted 6/24/2012 3:12 PM (GMT 0)
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.
Posted 6/25/2012 2:10 AM (GMT 0)
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!
Posted 7/2/2012 4:24 PM (GMT 0)
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).
Posted 7/2/2012 4:27 PM (GMT 0)
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.
Posted 8/26/2012 3:36 AM (GMT 0)
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?
Posted 10/6/2012 11:10 AM (GMT 0)
@Dexter2127,
You can get well. If you take proper care for it.
Posted 5/23/2014 5:33 AM (GMT 0)
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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