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MS "Hug". I thought that this was a well known symptom.

I am a bit confused / worried about what happened with my Neuro team the other day.

Since last week I have been experiencing pain around my chest. A tight, constricting feeling like - for want of a better description - a tight band or a tight HUG around my lower chest. Oh great, I thought, this must be the famous “MS Hug” that I have heard about and, as it was lasting more than a couple of days I will have to let my “team” know when I went into have my Tysabri infusion on Tuesday.

So I mentioned it to the young houseman on the clinic when she was asking about symptoms and any new symptoms. When I said to her “I have this constricting pain. I think that it is the MS Hug” she just looked at me blankly and said “what’s that?” So I explained and I also told her that it used to be called “MS girdle” (which is what it is called in the US). Nope. Not a clue. Never heard of it.

Even when I said that “it is a form of (common) neuropathic pain expienced by a number of MS patients” still not a flicker so off she trots to the consultant on duty on the ward. He comes and goes through the whole medical history and examination that she has done.

“So what, exactly, is the matter?”

"Well I have a tight, consticting “hugging” pain around by lower chest. It came on suddenly in the last 3 days. I haven’t fallen and there is no obvious mechanical cause. I think that it could be what is referred to as “MS hug”

“MS what?”

“MS hug”

“Have you just made up that name?”

“No. I think that it is the name that is commonly used to describe neuropathic pain of this type. My previous specialist and nurse listed it as a possible symptom to look out for and I think that there is info about it in the MS Society leaflets that you have over there on that stand”

“Oh well. You are probably having “a bit of a relapse” then. So I’ll book you in for an MRI”

Sheesh I know that we should all “take control” of our own condition and treatment but I did expect a consultant who runs 1 of the MS out-patient clinics might have a bit of a scooby-doo about what he was consulting about !

yup, my neuro consultant had never heard of the awful ms hug either. i was wracked with it for the first 3 or 4 years from the earliest really bad symptoms that id had. not very helpful when that happens, ah well. it stopped being a continuous problem, now it’s only occasional. have you tried baclofen? i find stretching out the muscles really helpful, particularly before i sleep.hope you find something that helps, and at least you know that we know what you’re talking about here!

wendy x

Yep, my consultant was the same, looked at me as if I’d lost my marbles when I said I’d experienced the MS hug. He’d never heard of it.

my local bus driver knows more about ms than my EX neuro…

my current one however at least accepts what i say as true despite how crazy it sometimes feels.

ellie

Is that you current bus driver or current neuro who is better informed than your Ex-neuro?

I know what you mean about supposed experts who don’t seem to have a clue about what they are supposed experts in. I “didn’t bond” with my first neuro who had me in tears on more than 1 occasion. I only ended up with a diagnosis because he was so p****d off with me that he referred me upwards to the professor who was in charge of the neuros in the area.

His letters to my GP were “fun” though - I liked the way I started out being referred to as “this delightful lady” progressed to “this lady” and ended up as “this woman”! I have thought of framing his final “washing his hands” letter to the Prof which includes the great phrase “I have assured her that she does NOT have MS”.

What really worries me is that he has actually given evidence to Parliament as an expert in neorological matters (although not about MS)

hi, i moved to a different county 5 yrs ago. i got on v well with my neuro where i lived b4.

when i moved here my 1st encounter with the new neuro was so similar to yours its unreal!! my files hadn caught up with me yet and he asked y i was there as theres nothing wrong with me, n he reduced me to tears…i didn warm to him at all, as when he got my files, he still doubted me, even the mri!! so he sent me for a new one, which showed more lesions than the previous…

as ive told my ms nurse and most docs i see, that i dont like him, im now seeing a new neuro in jan, and have been assured ill like him!! it took lots of complainin to get a new one, but at least i dont have to see a man who thinks i can “fake” MS , i arrogent and thinks he knows everything(he was arrogent, impatiant,and dismissive) but was ignorant

im not the only patient who has said they dont like him, alot apparently, so its not just me!!

i get on with almost every1, but i didnt like him or his attitude

take care lynda x

This explains it very well, perhaps you should send the link to your neuro lol. I get it in my neck and right rib and top of my arm its agony.

http://www.healthline.com/health-slideshow/multiple-sclerosis-hug#1

I’ve had the same thing happen to me also so you are not alone.

I was even sent for an ultrasound scan to see what was wrong with me. I didn’t know about this site way back then and therefore i didn’t know about the ms hug myself.

The scan obviously found nothing wrong but then i came on here and was relieved to read an explanation to my symptoms.

It’s quite amazing to see how many of us have experienced this but the medical teams who are the ‘experts’ don’t always know about it.

WE are the REAL ‘experts’ of our ms. At the beginning of my ms journey i was shocked at this but now after 8 years it has become normality.

I now have no trust in the medical profession where my ms is concerned. I only go to my neuro appointments so i can continue to get my rebif. This is not just down to the ms hug incident but many other times where i have tried to explain my symptoms but have not been believed or laughed at.

My last neuro appointment was awful. There was a student in the room and the neuro spent the whole time explaining ms to the student. When i tried to ask for some help with some symptoms i was having i was told to “sshhhhhhhh” while he continued his conversation with the student. I walked out without the help i was hoping for and was told “you are lucky that your ms is quite mild”

I am quite aware my ms is not that active at the moment but i really did need some help with my symptoms.

I really can’t believe you are being sent for an mri! what is he going to find? evidence to say you have ms!!

If we didn’t laugh about these things it could really send us insane! Its a good job we have eachother to chat to.

Take care

Teresa.x

That is soooo bad!!!

I have just got back from my neuro appt and mentioned the awful constricting feeling I have had for months now and she said straight away “THAT’LL BE THE MS HUG, VERY PAINFUL AND ANNOYING SYMPTOM” Yeyyyy!!! I was thinking of you when I mentioned it.

She has asked me to try Gabapentin to help with it.

I really feel for you but I would go to your GP and ask him/her to look the hug up on the web.

Shazzie xx