ms hug?

[rrnichol]

Hi, one of my very first symptoms was going numb from my toes to abdomen over a month and a half period..

then about three months after it began it slowly faded away until all that was left was a band about a inch thick across my abdomen come November this year.

Now in the last few days I've noticed this band has increased in size to about two inches thick...could this be a episode or is this a common occurrence with the hug?

One more question... is it common for ms to cause rug burn sensations in a certain area then slowly fade away over a period of days or weeks?

How about a cold wet feeling? Like something is being poured on your calf  periodically then just vanishes?

Thanks for your feedback... I'm sorry if these questions are silly but I'm just learning as I go. :)

[Mcnickyo]

Ditto ditto, more or less.
That ms hug is so deeply uncomfortable. It may go away for a bit, but always comes back. I began ms 25 yrs ago with creeping numbness from my toes up to my bra line. It stayed for three weeks or so and pretty much disappeared except both feet and left knee are between numb and "dead". A year later I had optic neuritis in one eye, lasted 6 weeks..started to improve after a week. No meds. Still.
Ms hug, I hate it so. Feel like wearing a bra six sizes too small when wearing no bra.welcome to this group. People r so kind and helpful!! Wish I could write more. Best, Nicky

[rrnichol]

I just wanted to post incase others question their symptoms in the future... what I have described as my symptoms are common as far as my neurologist was concerned and consistent with ms.

[rrnichol]

I already had my brain mri back before I saw the neurologist and he said something along the terms that  at least one of the lesions  was consistent with my symptoms of ataxia, vomiting, vertigo, ect....and he suggested that he believes the numbness came from a spinal lesion just below the shoulders so I have two parts of the spine being looked at by MRI this Wednesday.
Thanks

[supermum_ms]

I doubt it was specifically because of brain lesions, ascending paresthesias stopping beyond limbs to include the trunk is typically a 'spinal' sign.....keep in mind that even though you may not of thought about your neurological exam results, there would have to of been some abnormal clinical signs, which was more likely indicating spinal cord involvement.

hmmm guessing but it could even be to do with your actual clinical signs, not being symmetrical/bilateral which would lean more towards partial and not complete traverse. When do you get your brain and spinal MRI's results back?  

Cheers.........JJ  

[rrnichol]

I had a look at them and yes I was aware of the same as the write up had explained. I actually questioned my neurologist when I had seen him initially as I believed that fit my experience as well. He disagreed immediately. I'm not sure why he gave me no indication as to why...perhaps it's the fact that I had brain lesions??

[rrnichol]

Thank you JJ I'll check it out. :)

[supermum_ms]

:D sorry for any confusion, your heading (MS Hug?) and question..... "in the last few days I've noticed this band has increased in size to about two inches thick...could this be a episode or is this a common occurrence with the hug?" was why i was explaining the MS HUG.

In relation to how you've been describing this same banding numbness as having travelled upwards from your toes and your description of the remaining band of numbness increasing etc isn't actually consistent with how the 'MS Hug' works but that isn't about whether you have MS or not, just whether what you are 'describing' could be the same as the MS Hug or not....

Symptoms can be really weird and hard to explain sometimes, think of numbness as basically being more finite, numbness is clinically detectable and measurable with pin pr_ck testing etc. Numbness is not so much an altered feeling but a total absence of feeling ie zip, nadda, nothing, gone to sleep, dead etc.

Tingling, pins and needles, burning, wet etc (as ess explained) are not the same thing as numbness, they are basically all paresthesias which are more an abnormal or altered sensation but still a feeling as such, rather than the absence or zero feeling of numbness.    

As an example of similar but not caused by a spinal cord lesion, my brother has peripheral neuropathy in all peripheral limbs now, which technically developed over years but when it hit his feet, it was fast moving from the time he felt the banding around his ankles, like he was still wearing socks. Below this banding line his feet felt odd and tingly and this banding, and odd tingly feeling over the coming weeks kept travelling up (ascending paresthesia) until it eventually stopped. He has paresthesias to some degree everyday but when he's gone 'numb' he trips, falls and injures him self because he can't feel his legs/feet at all! It wasn't caused by a central nervous system spinal cord lesions, it's similar but not the same causation....

"The first symptoms in transverse myelitis are ascending paresthesias or back pain at the level of the myelitis, plus leg weakness and sphincter dysfunction (Altrocchi 1963; Ropper and Poskanzer 1978; Dunne et al 1986). Tingling or paresthesias in the feet soon progress to loss of pain, temperature, and vibration sensation, and then halt at a sensory level, usually thoracic (approximately 80%). There is an encircling band of hyperesthesia at the dermatome right above the sensory loss in one third of cases. Cervical levels are less commonly involved. There may be a dermatomal band of hyperesthesia 2 or 3 segments more rostrally, and pain is often interscapular. Weakness is usually flaccid at onset ("spinal shock"). In two thirds of cases, weakness is severe, with inability to walk, and often evolves to total leg paralysis and spasticity." http://www.medmerits.com/index.php/article/transverse_myelitis/P2

What you have consistently described is more in line with paresthesia which was ascending (travelling up) and traverse (across) causing bilateral symptoms below the chest line, than what's consistent and specifically called the MS Hug.....below is a very long list of causes and distinguishing diagnostic evidence that explains each, including MS that you might find informative.
http://www.medmerits.com/index.php/article/transverse_myelitis/P8

Food for thought...........JJ

PS this is specifically in relation to the MS Hug and not whether you have MS!
  

[rrnichol]

Thank you for your response and yes I understand... So this is normal in ms....and yes I do have what your describing I got this cold sensation on my shin weeks ago and it comes and goes and yes just the other day I got the same thing on my knee on the opposite leg..it comes and goes as well...it's not every hour of everyday...

And it does not move around I just have it in a few different locations at different times...like I said I'm likely describing it incorrectly cause when I get these responses I'm thinking... ok well that's what I'm saying...lol

Thanks

[essdipity]

As I said, burning or cold, wet or dry, buzzing, numbness, tingling, etc etc are all paresthesias seen commonly in MS. They don't, however, move around from hour to hour or day to day. Nothing in MS moves around or stops abruptly in one place and starts up in another, or morphs into something else entirely, except over a fairly long time. MS lesions don't suddenly heal and move to somewhere else where the same sensation or motor impediment begins again. Just not how the disease works.

An MS paresthesia doesn't have to be constant, as in 24/7, but it does have to be consistent. My burning right shin and foot have been with me for years, virtually every day,  but only in the evening and at night. Not always at the same intensity, and sometimes the area covered is much larger than at other times, but for me the whole thing is as inevitable as death and taxes.

[rrnichol]

Thank you....and yes the hug is around the chest area....the numbness did start at the toes and move upward
...it was not the hug I was trying to explain as a duct tape tightly going up the legs what was meant by that was the numbness to touch the leg was like I had tape wrapped around me as though I could not feel my usual sensation to touch....
I seem to have a hard time explaining on here I can see.... and getting across exactly what I'm experiencing....
And yes as far as I've been educated I'm not the first to have it go from my toes to my torso....I'm not asking if that's ms as my neurologist has already answered that for me I just wanted to know if the sunburn sensation was common and the cold spots as well as if it's considered another episode if my chest numbness is spreading again ...
I guess I'll wait until I see the neurologist in two weeks to get a answer...
Thanks anyway

[supermum_ms]

In regards to MS, symptoms are generally never symmetrical, symmetrical is one of the diagnostic red flags. Symptoms can 'develop over time' on both sides of the body in MS, but if the symptoms 'first present symmetrically' it's less common to be MS and more common to be one of the other conditions, that usually causes bilateral and or symmetrical symptoms eg Transverse myelitis (TM), peripheral neuropathy, structural spinal issues etc etc

In MS symptoms don't usually spread out in different areas or move from one location to another in a random fashion, multiply, change etc. At times what you're 'describing' is at odds with what would 'usually' happen if it was caused by MS.......back in your first post (neurology -dec ) before you saw your neuro, you mentioned the numbness spread up from your feet to your lower chest but you also mentioned "My lower chest feels like I have a belt wrapped tightly around it still."  

The tight banding feeling (tight belt) you've described before, that goes around your lower ribcage (chest), is more in line with the 'MS Hug' sensation. In MS the Hug is caused by spinal cord lesions, but this sensation isn't exclusive to MS and since in another post you mentioned....."it started as a buzzing in my feet that turned into a numb sensation that started crawling upward...it even was wrapped around the back side my legs I kept describing as duct tape was tightly wrapped around them yet it made its way to my abdomen"  

The MS HUG banding sensation is normally around the upper torso, but i've never read anything where it starts off around peripheral limbs first and then moved upwards to the torso. When an MS spinal cord lesion is the cause, the banding sensation is typically around where the lesion is located, which really makes me suspect what you've been describing doesn't sound right enough for it to be from a central nervous system lesion and causing the MS Hug.

Hope that helps and not confuses.....  

Cheers.............JJ

[rrnichol]

Yes when I say my abdomen I mean just beneath my chest...

When I get the sunburn feeling it's in random spots one at a time and not at all times. Once I noticed the skin seemed warmer in the area but no other time.

I get the cold feeling now too once on my shin and in the last few days on my knee region but only one spot at a time.

So aside from the hug it seems the rest of my symptoms are random and spread out in different areas when they occur.

[rrnichol]

No problem... thanks for sharing...:)

[essdipity]

Just want to add that sometimes people are confused or misinformed by one-sided symptoms. Lots of MSers have symptoms on both sides of the body. It is relatively rare for the exact thing to occur in the exact places bilaterally, true, though that does happen. But it is very common to have different symptoms on each side. For instance, weak hip flexor muscles on the right, optic neuritis on the left, or whatever. And many symptoms don't really have a 'side'--vertigo, fatigue, etc.

I don't mean to imply that you yourself are confused by this, but many more people read here than post, so I thought this would be a good time to make this observation. And after all, MRIs show lesions on both sides routinely.

ess

[rrnichol]

I have seen my primary doctor and a neurologist... just in the process of ruling out but my neurologist said if he had three guesses I have ms ,ms, or ms...not everyone has numbness only on one side it differs for everyone I've been informed... so Ya just wondering if anyone else has experienced this or can relate. Thanks

[essdipity]

I'm not sure about the hug sensation since I haven't had it in quite a few years, but I know that it only very rarely would cause problems around the abdomen, as it's nearly always waist or chest high. So this is not impossible, but it's unlikely.

As to the 'rug burn,' this is what I call the chapped or sunburned feeling on a patch or patches of skin which is really quite normal in appearance and temperature. It was my first MS symptom and I still have it much of the time, one of the many possible MS paresthesias. A cold feeling, wet or dry, is quite common, also a paresthesia. These are all caused by malfunctioning nerves, and are pretty much classic in MS.

ess

[SarahL2491]

When you mention toes (in the plural), I started to doubt MS, as usually it picks one side or the other of your body.

Have you consulted a neurologist about this?  I have had the HUG and in my case, it hurt like heck, felt like someone had a corset around my entire rib cage.

Feel free to browse the categories on this page, top right where the magnifier glass is.  There is a wealth of information there.

At this point, you definitely need to see someone and you might start with your primary doctor.

MS has many diseases which mimic it and they all have to be ruled out.  It took me many years and more than several neurologists to come up with a definite diagnosis.  MS works slowly, so be patient and hopefully someone will give you a treatable diagnosis other than MS.