Just my two cents here. I've been following the thread and have read lots of great info here.

Tkirk I am sorry you are feeling so crummy, I hope you are on a healing trend and the worst is over (for now).

In November I went to my pcp for a routine physical and my urine test came back as a massive infection. Yet I had absolutely no sx and hadn't noticed any changes in my usual bladder issue, hesitancy, or anything else.

After 5 days of abx I was fine. Better to be safe then sorry. Feel better.

Is your hug (sometimes or always) accompanied by numbness/skin sensations too? I used to describe the sensations as like having a 6 or 8 inch elastic belt or band, stretched to the max, wrapped around my middle, and released so that it is squeezing my skin (and everything else).

Honestly, this isn't that common, but your neuro should recognize what it is.


I think we have to, as a coping mechanism, Frank. Quite honestly, if I thought I would have to live forever with the "extremes" I've gone through, I wouldn't want to.

I don't know if they have a name for it, but I am very thankful it isn't "all on" all the time. When it's not, and even though I never go back to "normal" any more, I appreciate every day to the fullest.

Cherie

Cherie - I get the same way. Digesting food hurts and I don't do it well when I am like this. As far as eating, I think you are right about the mind over matter to some degree. But is that from the pain or a physical symptom due to the MS? I'm not sure. Kind of like what came 1st, the chicken or the egg. Either way I know that when I get like this it's smoothie time. (Cucumber yogurt smoothies are really good!) I can't eat anything that is difficult to digest.

Many times I have to lay down and put my arms over my head to get that good deep breath. Or I do yoga stretches. It helps even if only temporary. As for the sucking your stomach in, I am so with you on that one. No ab workouts for me. I gave up on that.

MSacorn - Thank you so much for that information. That is exactly what the neuro and uro said. Because of our mixed up sensations we may not feel an infection.

Kind of funny story about bladder issues. I was at DBF's one day and was horrified as I felt like I had just peed myself. So off I got to the bathroom thinking I was going to have to shower and change and was completely humiliated.. I get in there and to my surprise, I was dry. LOL. Yes, our sensations are mixed up. This happened several times that day. I finally decided I was not going to run to the bathroom anymore until I saw a puddle.

I'm leaning towards the explanation you've gotten as it really does make the most sense, Koala.

The thing with the hug is that it is apparently due to spinal lesions. In my experience, when the hug comes on, there are several other sensations (as tkirk mentioned) that come on at the same time; sensitivity to touch, burning, numbness and it is often very, very intense.

I have had the hug on it's own, when I was in the final healing stages of a spinal lesion attack, that just felt like pressure with difficulty breathing (like heaviness on the chest). However, the only sharp pain that I've had associated to the hug is the way my skin felt. I've had no sharp pain internally.

It may be a spasm of some sort that you are experiencing, which I get BETWEEN my ribs, internally . . . that's not due to MS though, it's from Ulcerative Colitis.

The hug spasms don't feel like other spasm at all (to me). That's what they ARE, apparently, but the only indication that it is a spasm (for me) is little jittery feelings inside; nothing sharp, and nothing like the charlie horse spasms I get from spasticity in my legs.

Maybe others have experienced something similar to what you are saying though, and can relate. I would at least be getting that checked out for another potential cause though, if I were you . . .

Cherie

When I was at the neuro's last week confirming that I was having an exacerbation I did ask if this was from spasms or nerve as to me it felt more like nerve. What he said was that it is both but since I had the sensitivity to touch I was experiencing a lot of nerve pain, hence the increase in Neurontin. This actually makes sense as if the nerves are "whacked" then they in turn don't communicate with the muscles or over communicate causing spasms. (This last part was my own logic, not his as I was in too much pain to really care to hear a full on explanation. LOL)

Part of it may be that often our bowels aren't working properly during this period too. I will go weeks without one BM, and my stomach and back are experiencing that pressure as well. I don't "feel" anything (of course, I'm numb), but my abdomen and back are swollen from not having the muscle/coordination/ability to go.


Yoga breathing exercises are awesome, and agree putting my arms up (especially when I am laying down) is the best way to get a breath. Breathing exercises are good for helping to distract us from the pain too.

I don't do any other kind of exercises when this happens, or even have much movement when it's really bad. As soon as I start to feel slightly better though, I do as much as I can tolerate, at every opportunity. If only one area is numb, I do exercise the other ones (stretches, foot curls, etc.), but sometimes most of my body is going through it so I don't do anything. It's a long 6 weeks . . .

MSacorn, you are right about not feeling things (and/or feeling things that aren't there; trickles, buzzing, hot patches, cold patches, etc.), and I really can't emphasize enough how important it is to keep our fever in check and infections treated, especially with spinal lesions. Every spinal lesion attack I've had so far has started from an untreated infection or virus that increased my body temp. It doesn't take much of an increase either . . .

Cherie

Thank you Cherie!

In an effort to help I've called Pest Control. They are coming to get that boa constrictor uncoiled from your torso!!!

I know you're not a large person, but the Hug sounds like a size 22 woman wearing a size 12 girdle.

I haven't experienced it yet, so just going by the posts. Ugh! So sorry for you, Frank, et al.

Be well, my friend. (very gentle hugs)

Movement is rough. I spent 4 days laying down, not comfortably, but laying flat on my back. I went from one couch to the other to my bed to the computer to check for work and "lurk" and/or post on here to back to the couch . . . I was so thrilled when I could sit up for a little bit. Big sigh of relief.

Again, 4 to 6 weeks is a pretty good prediction as that is what I have experienced in the past with this thing. It is a slow healing process.

No Twink. It is a size 22 woman wearing a size 2 girdle.