Hi everyone, I am not diagnosed with MS. My brain MRI showed high signal areas and I am waiting for lumbar puncture and VEPs
Does anyone suffer from MS hug? I was wondering if I am experiencing it.
For the past couple of years, I have been getting this awful feeling of tightness, heaviness, constriction around my chest and it feels as though I cannot fully inflate my ribcage and get a proper breath in. I feel as though I have a boa constrictor wrapped around my ribs, some days worse than others, although I will admit it is a lot worse when I am feeling stressed and anxious
I have had some lung function tests when this all started and it was all normal. I do get chest pains and my ECGs that I had previously were abnormal so I had a coronary angiogram but this was clear and I have a diagnosis of coronary artery spasm and am on medication for this. I also suffer with lot of wind and dyspepsia and I am having a gastroscopy on Thursday (oh joy, I am REALLY dreading it) so it could be reflux, gastritis, etc.?? I have IBS and seem to have developed a lactose intolerance and now wheat seems to arragravate me, soon there will be nothing safe that I can eat! haha Sometimes when eating either crisps or biscuits, (small dry things) they don’t seem to go down my throat properly, it is not a feeling of a lump, more an awareness that the muscles do not seem to be coordinating correctly, so am not sure what is going on.
Anyway does this sound like MS hug? or maybe just good old GERD? I suppose I will hopefully get some answers after the gastrocopy on Thursday but I will admit I am very scared they will find something nasty, and I am only having the throat spray, no sedation so it is not going to be pleasant!
The feelings of chest constriction certainly sound like what many MSers refer to colloquially as “The Hug” (not actually a medical term). It’s a spasm of the tiny muscles (intercostal muscles) between the ribs, so can certainly give the sensation that breathing in is difficult or obstructed, as if in a tight corset, as the natural expansion of the ribcage is being impeded.
I’m not sure whether the swallowing problems are an unrelated symptom (but still with the same underlying cause of a CNS issue - whether MS or something else).
I’ve been diagnosed just under five years, and have just lately begun to experience some swallowing problems.
I also very occasionally get what I interpret as “The Hug”, which for me, almost always strikes at night, and feels like pain or pressure under the breastbone. It usually lasts only a couple of hours, and is gone by morning. Prescribed muscle relaxants (Baclofen, diazepam) have reduced both frequency and severity, which is why I’m reasonably confident it’s muscular and to do with MS, rather than anything more sinister.
I feel that for me personally (it may not be the same for you) the chest pain and the feeling of food “sticking” on the way down are two different problems, as I’ve not noticed the timing is linked in any way. I only get the hug very occasionally, and in fact feel I’ve not had it since the swallowing issue began, so don’t think they’re part of the same thing (though both may be MS-related).
Like you, I’ve wondered if there was a problem with GERD, as my throat seems to feel constantly irritated, with a hoarse voice and tickly cough, as well as the feeling food is not always clearing my gullet properly.
My GP (two of them in fact, as I’ve been about it more than once) did not think it is the result of an infection, and did agree with me that acid reflux was a possible cause, and that antacids were a reasonable course of action, so I’ve been taking Gaviscon Advance, at nearly £9 a bottle!
I was offered a referral to ENT for as endoscopy, but as I am verging on hospital phobic (a bit unfortunate for someone with chronic illness), and (like you) find stress and anxiety makes things worse, it’s a bit of a toss-up whether the stress of having to go would outweigh any revelations. Because I have quite a long history (well pre-dating diagnosis) of a troublesome throat, the doctor thought it was most unlikely to be anything dangerous (i.e. if it was a malignancy, I wouldn’t still be as ‘OK’ as I am all this time), so she considered it would be an elective referral - i.e. “We can try to find out more if you want”, rather than something she would recommend as essential. So given my high levels of anxiety about the hospital, you won’t be surprised that saying I could have the investigation “if I want”, but it wouldn’t be dangerous not to, has not left me in a rush to sign up! So far, all doctors have been very hesitant about linking it to MS, as it may turn out to be something I’m just prone to, that has nothing to do with it.
However, I have read that in some cases, MS can result in problems with the little valve (the sphincter) that prevents stomach acid escaping back up into the oesophagus. This is pure conjecture on my part - it’s never been proved that it is that with me, or it isn’t. Of course, acid reflux is a very common condition in the population at large, so even if I did have it, it wouldn’t necessarily follow that it had anything to do with MS. It could be just an unrelated condition that I’ve been “lucky” enough to get as well.
I’m fairly resigned to it that I may never know - these links are difficult to prove for certain, and MS is certainly no protection against having other stuff anyway, unfortunately.
Hi we seem to have similar symptoms! Although I am diagnosed as “fibromyalgia” at the moment, I never really did think that is what is wrong with me, most of my problems seem neurological.
Being in Limbo and having far too much time on my hands, I suppose I am making too much use of Dr Google (I know I shouldnt) but I have even wondered if in fact I could have coeliac disease, I know this can manifest as brain lesions that can resemble MS but not sure how rare or common that presentation is. Coeliac is in my family and I have had vitamin B12 injections for over 8 years as I suddenly became deficient around 2007, I have also had vitamin D deficiency and I have bile salt malabsorption syndrome, (I have had diarrhoea all my life, sorry if TMI) I have had a blood test for coeliac in the past which was negative but I believe this can be the case and the only way to know for sure is the biopsy done at gastroscopy so I might get an answer once and for all and put that question to bed. It might all be coindence and I might have some other stomach problem and MS, or maybe not MS at all. I think I am grasping at straws somewhat as I would much rather have coeliac than MS!
I think I need to try and stop stressing over it all and just go with the flow and get the tests done and take it all from there. I just hate all this waiting and not knowing.
I’m new to this MS lark, but I get ‘the hug’ too. Usually I wake up with it first thing in the morning or during the night. Feels like I’ve had someone sitting on my chest - it feels like I’ve been ‘crushed’. I can’t sit up when I have it, and I actually have to grab the headboard and pull myself up (thank goodness for a metal bed frame!). It’s so painful and every movement hurts. First few times I had it, I put it down to sleeping awkwardly. I know better now. During the day I get cramping feeling on my right hand side, from my spine around to under my right arm, but not entirely around my ribcage, so I don’t know if that’s a ‘mini-hug’ or something else! I tend to have a long period without getting the hug, then a couple of weeks where I seem to get it most days, but it goes away after 30mins-2hrs. I’m keeping a diary of every occurance (and any other symptoms) ready for when I see the MS nurse in September.
I also have problems with reflux. Had a PH & Manometry done a couple of months ago, which recorded 53 episodes of ‘reflux and acid reflux’ over 22 hours. There is an op that I can have to stop it, but guess what. Consultant doesn’t want to because of my MS, as she says I might have problems with swallowing in the future due to the MS. I don’t really understand her reasoning, as surely if I get a problem with swallowing it’ll be a problem regardless of the operation?.. I am on Esomeprazole (was previously on Omeprazole, which isn’t quite as effective as Esomeprasole for some people) for it as it cuts down the stomach acid. Works like a dream. Still get reflux, but it doesn’t burn. I also have what the consultant has confirmed as a very strong gag reflex (poor nurse who put the tubes to my stomach via my nose discovered that, unfortunately!), so I quite often vomit for no particular reason (after laughing, coughing, when laying down), so for that I am on Domperidone as it helps to empty the stomach quicker. Definitely worth asking your GP about Omeprasole. It made such a huge difference for me.It’s taken me 18 years to get this far with my stomach problems. The consultant before my current one diagnosed me with ‘undiagnosed vomiting’. Current consultant seemed a bit bemused by the previous consultant and said that diagnosis was about as much use as a plate of cold puke!
Hi everyone, bit of an update. I have had my gastroscopy, without sedation, just the throat spray! I was very anxious beforehand. Being honest, it was not a very nice experience, not painful more uncomfortable, but I did gag a few times and it was hard work swallowing the tube but I just tried to relax and concentrate on breathing through my nose, from the moment the scope entered my mouth to being pulled out was literally no more than about 2-3 minutes. It was very quick.
Luckily, all was normal, no redness, no acid, no ulcers, nothing sinister lurking down there. The only thing the Dr commented on was the duodenum lining, instead of being all wrinkled, mine was very smooth so he said I could well have coeliac but obviously we won’t know anything until the biospy results come back. Interesting. but then again, it could just be normal for me!
Anyway, today my throat is a bit sore when swallowing but otherwise I am fine and soo glad I went through with it now for peace of mind.
So I am off to Cyprus next week, then when I come back off for lumbar puncture and VEPs and then hopefully once all results are in, I might be nearer to finding out just what is wrong with me!