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Ms Hug help


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Old 11-04-2018, 08:51 AM   #1
jkl915
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Ms Hug help

Hi Iíve had primary progressive ms for 5 yrs now and I seem to think I had it a lot longer. Iíve had had the ms hug 3x in the last five yrs but always around my ribs. I have it again but this time it was across my chest. I swear I was having a heart attack. Went to urgent care and got my prednisone and Iím starting to feel better. Has anyone ever had this problem. It really scared me cause this is the first time it ever went up this high.

 
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Old 11-04-2018, 12:56 PM   #2
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Re: Ms Hug help

Hi jkl915.

What is referred to as the "MS Hug" is simply muscle spasms of the intercostal muscles. Steroids aren't usually used as Muscle Relaxers will usually help the "MS Hug." Glad you are feeling better.
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Old 11-04-2018, 01:40 PM   #3
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Re: Ms Hug help

Hi thanks for the help . I already take 60mgs of baclfen and I still end up getting it. My Dr gave me this the last time too. Have you ever had it go beyond your ribs?? Maybe something else was wrong who knows 😊 thanks

 
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Old 11-04-2018, 02:37 PM   #4
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Re: Ms Hug help

60mg of Baclofen is actually a fairly low dose, it can go much higher and there is a Baclofen Pump that can be surgically implanted. There is also the option of adding in another muscle relaxer.

Steroids are used for acute exacerbations (relapse, attack, flare-up) and not for symptom management. Steroids have short term and long term serious side effects such as; steroid induced Glaucoma, steroid induced Diabetes, steroid induced Cataracts and steroid induced Osteopenia/Osteoporosis.

The MS Hug is when it feels like you are wearing a tight band around your chest. It can make you feel like you have an elephant sitting on your chest and feel like you can't breath. Although the "MS Hug" can be scary it will not stop your heart and you can breath.

When I have experienced the MS Hug it goes all around my upper back and chest.
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Old 11-04-2018, 03:53 PM   #5
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Re: Ms Hug help

Ok thanks for all the helpful information. Maybe the next time it happens and Iím sure it will😟 Iíll ask my neuro if I can up my bacflen. Iím not really sure about the pump yet. In 5 yrs I have only had it 3-4 x . So Iím guessing Iím lucky😊. I had a stretch where I was getting a lot of spasms and I upped my Baclofen and I got really sick. But Iím thinking I took to much at once. But thank you again you really have been a great help dealing with this issue.😊

 
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Old 11-04-2018, 05:21 PM   #6
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Re: Ms Hug help

I have had PPMS for 41+ years. I have had MS hugs since the beginning of my journey. At first they were scary, but afterwards, they ceased to be scary and just became an annoyance. PPMS patients all to often do not have good luck with meds. Some MSers are able to get relief from the MS Hug with a tepid shower or bath or even to lie down. I hope you get relief soon!
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Old 11-04-2018, 06:47 PM   #7
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Re: Ms Hug help

Wow thatís a long time. Iím already feeling better thank you. Iím not scared anymore. I do agree with you they are annoying . I was just wondering cause so far they have only been in the rib cage area. Do you know if they pop up on any other part of your body. I just donít want to be surprised 😊. But all of your input has been a really big help . Iím gonna my neurologist tomorrow . Thanks again do you know anything about ocrevus?? I start this infusion drug the beginning of the year. I was on rutuxian for over 2 yrs. My Dr said itís the same but I donít know any input on this??🤔 would love to hear😊

 
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Old 11-04-2018, 08:36 PM   #8
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Re: Ms Hug help

The jury is still out for Ocrevus. It has FDA Approval BUT it is still at Phase III. There have been at least 17 deaths attributed to Ocrevus and the long term residual effects are still unknown. The American Neurological Association stopped endorsing DMDs for PPMS patients. The efficacy rates are so low and the costs, financial and physical, are often too high. Without assistance, Ocrevus is $65,000 per year. It is not a cure.

For me, my MS Hug has always been consistently wrapped around my ribcage. I have yet to see a change other than it has become tolerable and less scary
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Old 11-04-2018, 09:38 PM   #9
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Re: Ms Hug help

Yeah I know there is no cure but my neurologist thinks itís really slows down the progression. My ms has effected my left leg. I have a brace for foot drop and because of my leg weakness 2yrs ago I fell down a flight of stairs and broke my leg. At least it was left one. So Iím hoping something can slow this down.

 
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Old 11-05-2018, 07:13 PM   #10
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Re: Ms Hug help

Hi, just my input here. I have R/R MS, not Progressive, but I still have bouts with the dreaded MS hug off and on...when I get it, it can be anywhere from my upper ribs up toward my heart.

Its annoying and as Jayhawk said it stopped scaring me a long time ago, but sometimes it comes on so fast and catches me off guard, it literally takes my breath away until I realize what is happening and then I try to just breath through it. It can happen 5 times in a day for 5 days straight, or it can happen once every few months and disappear for years only to return. I am dx for almost 15 years now and have more than likely had this disease much longer.

I have never heard of being given steroids for the hug. This is usually just ignored as it goes away on its own. Unless this is accompanied by other symptoms indicative of a relapse, I would avoid steroids as the more you use them, the less likely they are to work when you need them. Talk to your doctor about this. A neurologist is going to be allot more familiar with you and your MS then an Urgent Care is.
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Old 11-06-2018, 10:29 AM   #11
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Re: Ms Hug help

Hi thanks for the input. But it seems like warm or hot water makes it feel worse. Maybe it’s a sensitivity think. My ms is on the left side. Thought it was just my leg but now I’m starting to think whole left side. Got a tattoo on my left shoulder in 2009 and it healed but was very painful for a while. Now when I’m in the shower and the water hits myleft side it feels good for a bit but when I’m done I’m in pain again go figure...��I’m sure I’ll get through it like every other time just very frustrating �� anyway thanks again

 
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Old 11-06-2018, 10:31 AM   #12
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Re: Ms Hug help

Hi thanks for the input. But it seems like warm or hot water makes it feel worse. Maybe itís a sensitivity think. My ms is on the left side. Thought it was just my leg but now Iím starting to think whole left side. Got a tattoo on my left shoulder in 2009 and it healed but was very painful for a while. Now when Iím in the shower and the water hits myleft side it feels good for a bit but when Iím done Iím in pain again go figure...😀Iím sure Iíll get through it like every other time just very frustrating 😡 anyway thanks again

 
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