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”
“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 !