TK, Sorry I'm coming into this so late, but wanted to give you some good hugs.

I've also had the MS hug a couple of times. And for me, it felt like a boa constrictor around my turso. The worst part is it hit suddenly one night, scared me a little. Hubby and I talked about the pain, etc. and decided that it wasn't something we should go to the ER for. (helpful to have around a son of a surgical nurse who grew up reading medical texts, lol).

Found a sitting position that made it felt great, but couldn't fall asleep sitting up. Ugh. That was a rough night for me.

I hope things improve for you regarding this.

I just wanted to mention and/or clarify a some points regarding the hug/spinal lesions, for those who have this to contend with (and want to know the nitty gritty).

Of course “nothing is absolute” with this disease, but my neuro has provided me with some awesome written material about spinal lesion attacks. I have gone through most of what I have read, so I suspect her advice would ring true in most cases of spinal lesion attacks.

I'll try to give my interpretation, based on what I know/have gone through . . .

1. Apparently about 75% of PwMS have spinal lesions, but most people will never have any attacks from them. Just because we have them, doesn’t mean they will be bothersome (same as brain lesions), or will effect us more then once in a lifetime.

2. If we have an attack from them, it can be mild, moderate or severe. I imagine that full body numbness, with paralysis and internal organs affected, would be considered severe; mild would be only one large part of the body (like the hug, but it doesn’t feel “mild” at all!); moderate would include the in-between.

3. Spinal lesion attacks are a distinct neurological event, and the attack “process” is the same (for me) each time; inflammation/escalation (symptoms getting worse) --> stabilization/status quo (symptoms remain the same) -->, repair/recovery (symptoms improve). The recovery process often follows the exact pattern of how the numbness came on, i.e. we improve first in the places where the numbness came on.

NOTE: The symptoms aren’t necessarily just altered sensations (pain, numbness, shocks), bladder/bowel issues, etc., but can include the excessive brainfog, fatigue, spasticity, back aches, headaches, motory problems, etc. too.

4. The process almost always takes 4 – 6 weeks of escalation/status quo, then 4 – 6 weeks of recovery. If the symptoms/damage does not start to recover by the 3rd to 6th month, the damage can be permanent. BUT if we do make some recovery by that time, we may continue to make additional recovery over the next two years.

Sometimes the process will be shortened by the use of steroids, but then it will repeat itself . . . (see below).

5. Steroids are not normally rx’d with sensory/spinal lesion attacks because there is no evidence that they help in the short or long-term (plus there are short and long-term side effects from the use). No clinical trials have ever proven their effectiveness for this type of attack...

(Utilization of steriods is personal choice, of course) but it is my experience that this type of attack will run it's course whether or not steroids are used. Steroids (seem to only) slow down that natural inflammation process, then the attack regains it’s momentum and continues to do what it’s gonna’ do eventually anyway.

Apparently pulse steroids may help longer-term "damage" . . .

6. The (ultimate) damage caused during this kind of attack (dependant on the severity of the attack when it occurs), is:

- 33% of the time (lesions heal, no permanent damage)
- 33% of the time (lesions partially heal, some substantial permanent damage)
- 33% of the time (lesions don't heal adequately, bedridden/wheelchair bound or severely disabled from the get-go).

With spinal lesions, sometimes patches of numbness, or the hug, will suddenly come on in various parts of our bodies, even though we are not officially in a spinal lesion attack (pseudo exacerbation). This numbness can be as a result of an increase in temp, fatigue, stress, infection, sickness, etc. . . . but once the trigger is removed the symptom will settle back down.

However, in the case of pseudo exacerbations caused by infection, this can lead to a real attack if the infection is not treated.

It is usually abundantly obvious if this is a “real” spinal lesion attack by the extent of the altered sensations. Even a “mild” attack is often painful, and includes a substantial part of the body (torso and/or legs and/or both hands/feet, etc.). A numb “patch” would not be considered an attack, but may be a warning sign to be checked for infection . . .

As for the “hug” specifically, this sensation (although it might not be called the same thing) can happen anywhere, not just in the torso area. For instance, I have had “the hug” sensation in my legs and feet too.

Cherie

MorningTK and everyone else

Cherie mine has been pretty consistent, and after reading this, figure yet another thing out. perhaps the nausea is not from all the pills, so i shall pay better attention when and what i eat, which honestly i have not felt like doing, much of late either

glad you posted this TK, it has helped give me some new insights to this MS. I have a bad habit of brushing off pains and thing going on with my body as no biggie or nothing to worry about, but now that I have a better grasp of this hug and now I know what it feels like as far as being decribed and going through it at same time, maybe next time when the hug hits me right away I wont push it back or ignore it but rather get to doc and maybe we could of started the steroid carp sooner instead of letting alomst 4 weeks go by without doing anything.

Frank - I am glad that this opened up many discussions. While I didn't plan on that and was curious about the sick feeling, I am glad that others have chimed in with their experiences with the hug. It helps keep things in perspective and get a better understanding of this aspect of MS.

Cherie - great points! Those are my understandings as well.

I wonder if the feeling I get has anything to do with the hug - it feels like all my insides are swelling up and putting unbearable pressure on the inside of my ribs - first noticed it when I was on ACTH - it felt like I was ready to pop and that my brain was swelling too - sort of like too much MSG - then I get a horrendous pain right at the base of my esophagus and feel like I need to burp but can't - have gone so far as to make myself throw up to relieve the pressure - it doesn't but none of my food is digested either - can't move in any direction that relieves it - and it takes a day or two to finally go away but I'm sore afterwards like someone had kicked me in the chest - never connected any of it to MS

KM - I haven't experienced anything like what you have described other than not digesting food properly. Have you been checked for GERD? Ask your dr about it the next time you go. On the other hand, it could be a result of the hug and your body's reaction to it. Others here may have experienced this. Let's hope someone chimes in with their experience.

Now we know good and well that you wanted all this attention!!!

Here is a friendly nice for you

and a friendly group for all of you!

I hope you ALL feel better!

That was a nice post Bird!

I was just thinking that this thread is an excellent example of how we all pull together to help one another. If one person doesn't know the answer to a question that's been asked, there's sure to be another who does.

As for support.......well.....all the hugs for those suffering at any given moment has to say a lot.

Thank you everybody, especially Tkrik for starting the thread.

LOL, Bird. Yeah, leave it to you to just chirp, chirp in here and spill the beans. LOL

It was a nice post Bird and I really appreciate the cyber hugs as a real one may put me through the roof.

see told ya she came from a good egg Thanks Bird, always want to type robin cause of the picture.

how you doing flair or is it flare or now a days is it phlare Sis

Good Day Annie how are you doing


KM when i get that feeling, it is usually from the inside, usually inflammation, i get pleurisy(sp?) and some other one I doubt i could ever spell it is inflammation between ribs and lungs (konstrictivitus(sp?))

I can tell the real diff between the two is like a bear hug i guess would be best way to put it a real strong one at times too uncomfortable painful and mine tends to stick around way too long


peace all