I seen a doc on tv the other day who said the 2nd leading cause of death in ms patients is suffocation from ms hug. True?
I didn't watch the Oprah show with Montel and Dr. Oz, but many of my MS blogging friends did. The one thing which has been talked about the most so far is that statement given about suffocation. The general concensus is that NOBODY had ever heard that statistic.
The MS Hug results from spasticity and tightness in the muscles around the torso, most commonly around the rib cage. Folks who experience this sometimes describe it as being a girdle which causes great pain, or it feels like having asthma where you can't get a good breath, or just like your back, abdomen, and chest are trying to squeeze too hard.
It does not cause suffocation. However, if you have lesions in the portion of the brain which controls respiration (breathing) and/or heart function then you have a problem. I do not believe that the same lesions which contribute to the MS Hug are the same as the ones which could affect breathing.
It was a serious dis-service of Dr. Oz/Montel to give that statistic without explaining what they really meant. Now all of our loved ones are going to worry that we will suffocate!! I would have to do some serious searching to find where they got that information, which just seems like terrible mis-information to me.
Please help me. I have had symptoms that have led me to doctor after doctor, but nobody seems to hear me. The list of symptoms is very lengthy, but my latest symptom, which has plagued me for the last year, has landed me in the E.R. a few times. It is a feeling of tightness up under my ribs, that sometimes feels painful (like a stitch in the side only all the way around) and it spreads all the way around the back, like I have a vice grip tightening around me. Or as I've explained it to my doctors before: like a corset and someone is pulling really tightly on the laces. It makes it hard for me to catch my breath sometimes, but in one E.R., the neurologist wrote in my report that she feels I was "embellishing" my symptoms and that my problem is "psychosomatic." Other doctors just shrug it off because they don't understand. I have been referred to a gastroenterologist THREE times because doctors said it was probably intestinal but it is not. It feels like it is in my diaphragm.
Another symptom I have is muscles that twitch all the time. Just by squeezing my eyes tightly I can sent my right eyelid into a twitching frenzy. Also, if I curl up my toes and squeeze, I send them straight into a Charley horse (severe muscle cramp). I also get many of those kinds of cramps in my calf muscles now. The other bothersome symptom is when I squeeze my hand tightly (like gripping the steering wheel or carrying a heavy basket of groceries or shake someone's hand tightly--or just simply squeezing anything tightly) my fingers want to stay closed once I relax the grip. I can pry them open easily with my other hand--or someone else can open them with ease--but for me to open them takes effort and usually, my pinky finger wants to stay jammed shut 'til the last minute.
About 10 years ago I was diagnosed with something called cramp fasiculation syndrome (that's what they called it in New Zealand) but they feel like those little eye twitches people get--only all over my body. I sometimes twitch 24/7, but it comes and goes now. And this band of tightness around my mid-section also comes and goes. Probably the worst experience with it was when I tried to go swimming. I got into the deep water and thought I was drowning just under the weight of the water--my head was not immersed. The weight of the water would not let me get sufficient air so I can no longer swim in deep water. That is a real shame.
I can no longer exercise because of my symptoms. I have much muscle weakness, much pain, and numbness in my face sometimes, as well as in my arms. Not a lot of tingling though, but I get needle like feelings in certain parts of my body--mostly in my arms. I used to be a jogger, then a walker, and now I can barely do that. I just found out too that I have Osteoporosis and "soft bones" but I am told this should not cause pain. I do have some arthritis but it isn't considered bad enough to cause this degree of pain.
I don't take any drugs because my official diagnosis is actually Fibromyalgia, which seems weird considering I don't have one of the tender points they say are needed for that diagnosis. And also, I am on disability for having Fibromyalgia and mood disorder due to constant illness. Oh, and one other thing, I have started to get a rash on my cheeks and over my nose, but they say it is not Lupus because my blood work comes back clean as a whistle. I have SVC's too (superventricular tachycardia) and I have passed out (syncope) twice from it. But alas, they say it's all in my head....
What I need is someone who will listen. I have been symptomatic for 20 years and I have been tested for everything under the sun--but usually, the tests are very basic. Also, I have had an EMG and nerve test in the past year. Something else I should also say is that I have had MRI's and CT' scans but I can't have contrast dye--they tried an abdominal one with contrast under a controlled situation and I still ended up in the E.R. with a very bad allergic reaction--so I'm feeling they might not be getting a clear picture. The only thing that has ever turned up in a CT or MRI of the brain is something that appeared to be "unchanged" on the Left Petrous Apex. I read that cysts can develop there and cause symptoms, but again, nobody listens to me about it. I DO have symptoms but honestly, I think these healthcare "professionals" all think I'm a bag of wind. The thing is, there are also visual changes--my face looks different than it did a few years ago--my eyes droop when I'm having a flare-up. They don't droop when I'm not. I have photos and I've showed the doctor. And my face "falls" when I tip to the side--into a strange grimace--and then becomes paralyzed when Im in that position. I have photos--and a couple doctors say that is NOT normal. But the neuros don't seem to acknowledge it.
Sorry, this has gotten to be a brainstorming session and I know I have other symptoms--oh, like blurry vision sometimes and double vision too--that's a real annoying one. And constant tinnitus--LOUD. Nausea sometimes and another new one is smelling things that aren't there. I smell smoke a lot in my house, or sometimes on my hands, but I don't smoke and I rarely have visitors here so there is no way I'm smelling smoke (also, when I smell it my daughter can't smell it). I live in a house and it's winter so we're all closed in so no smoke is wafting in from the street either. It is sometimes food I'll smell, but usually unpleasant smells. This happened to me once when I had a concussion many years ago. For a couple months I was smelling phantom smells. Oh, and I have what I call "phantom feelings" after I push on my back (in the same place I feel the vice-grip feeling. If I reach back and push on my mid-back, then release, it feels like someone is still pushing on that area and it can linger for several minutes--basically, it worsens that already-existing gripping feeling.
O.K. I've said enough right now. I just need some guidance, like a good neurologist I can contact who will take my long, long history and not turn this into something psychological. I have had enough of that and I know my body. This new gripping feeling around my mid-section is a real nuisance, but who knows, maybe this is what I needed to happen to get to the bottom of things. I have had symptoms of MS for years and no real help from anyone in the medical profession as far as getting to the bottom of it. I just want to get treated if that is what it is. Sometimes I wonder if I'm going to live for long. I'm 48 and have an 11-year-old daughter. I'm single, by choice. I'm also very happy with my life. I have learned to look at my illness as being part of who I am because I can't just ignore it--it won't let me. But I also can't lay around and be bummed out all the time because I won't be able to function or enjoy anything. There is always a reason to keep living. So I do. I just suffer in silence for the most part.
Thanks for listening...
I'm sorry that you're going through so much. I have no way of knowing if some of your symptoms might be MS or not, especially since you do have a concrete diagnosis of fibromyalgia which can explain many of the symptoms you've mentioned related to pain.
Perhaps what you can do is to call your local MS society chapter (look here) and ask for a referral to a neurologist in your area. And then when you suggest to the neurologist that you want to make sure that you don't have MS, he/she will likely ask you why you think you do have MS. That can get the ball rolling.
But please keep in mind that a diagnosis of MS is one of exclusion of other possible causes of your symptoms. Symptoms which can be caused by many different things. As far as the "soft bones" and bone pain, have you had your vitamin D levels checked lately. I was severely deficient in vitamin D and had pain which subsided as my levels returned to normal.
I wish that I had more information and guidance for you. It is not fun to know that 'something' just isn't right but to not know what the 'something' is.
Thanks sor my for your reply. I just got back from my PC because I wanted to talk about things further and because I am having much weakness. Also, feelings of electricity in my neck & head. But mostly this girdle sensation, which was exacerbated today when I tried to do some exercising. It's awful. Putting pressure on it seems to help.
My vitamin D is low, and I"m actually having it done again because I' have been on supplements, but it still seems low. Just had bloods drawn today. We shall see...I see the neuro on the 15th. In the meantime, the PC ordered an MRI of the spine & sacrum. She is good and proactive, and interestingly, studied a lot about MS and thinks there is definitely a concern. I do have some kind of myotonic activity though, which is normally associate with Myotonic Dystrophy, however, the neurologists from the past don't seem to think it's a dystrophy because of the symptoms and the fact that this flare ups and remissions.
Thanks again. I will keep you posted.
I have been looking up information on MS because I am worried I may have it and stumbled accross your message. I read through all your symptoms and wanted to write as I had a terrible time being diagnosed with my illnesses... I have two and autoimmune disorders Graves disease and Myasthenia Gravis. It is very common to have more than one autoimmune illness and it adds to the confusion when trying to get a diagnosis. It took me years of frustration before being diagnosed with these two and I still wonder about MS as I a few niggling symptoms that don't add up.... However, you mentioned many things that sounded to me quite like myasthenia. MG is very difficult to diagnose and quite rare. In myasthenia the neuromuscular junction is attacked by the immune system resulting i muscle weakness. The main difference between myasthenia and other muscular dystrophies is that the muscles show signs of fatigue with repetative use. No too people with it are the same and it can cause remissions and relapses. I have heard many people with MG experience a similar feeling around their diaphram and in fact it can be a big sign of as myasthenic crisis. MG should not cause pain but sometimes the pain is secondary to symptoms. Diagnosis is sometimes very easy. Some people have receptors in their blood whilst others have to go on clinical findings and EMG tests. The best thing is that it is a fairly treatable illness and it might just be worth looking into. There is a good website www.mgauk.org that might give you more information. You would need to find a neurologist with experience of MG if not a specialist as it can be quite misunderstood by other health care professionals.... I hope that whatever is wrong you get to the bottom of it. I always feel it is better to know and then you can find ways to get better... Take care!!
I've been experiencing something very similar, my GP suggested MS but ruled it out after a non contrast MRI and neuro consult. He's saying now he thinks it's fibromyalgia, even though I don't have the pressure points or a lot of the other fibro symptoms and haven't responded to treatment for it. I was also under the impression Fibro did not cause partial paralysis, I was recently house bound for 2 weeks after a sudden onset of symptoms and haven't got full function back. It's not the first time but I've never had so much trouble walking, looking after myself or needed assistance before, it was quite frightening. I'm already on disabilty and just coping.
I can relate to the "all in you head" business, I was a highly symptomatic coeliac for 18 years before I got diagnosed. 2 gastrointerologists missed the diagnosis and I was sent to psychs and for counselling, I was even acused of being anorexic, all it did was allow me to become even more unwell while people who were meant to be "treating" me sent me on a wild goose chase. I finally got diagnosed after (ironically) a psychologist recomended I have allergy testing. Stick to your guns, don't let anyone undermine your confidence and don't apologize for anything, just because drs can't find anything doesn't mean something isn't there.
I also have osteoperosis (as a result of malabsorbtion from the delayed diagnosis) have you had the cause of your bone loss investigated? 48 it's way too young to have it without an underlying condition.
I've heard some people show MS symptoms on opthamologist examinations having vision symptoms, I'm still on the waiting list to see someone. I'm also due to go back to the allergy clinic, the coeliac symptoms stopped when I went gluten free but these other symptoms have been accelerating, I'm on the diet so it can't be gluten ataxia this far down the track.
Does anyone know, does the "MS hug" occur with other conditions? I've been getting horrible tightness and crushing pain more frequently and more intensely lately. I don't go to the ER with it anymore unless it gets to the white out stage. By then I can't get there on my own because any movement makes it worse, those green inhalers actually make the pain sharper, pethadine does nothing except make me fall over if get out of bed and morphine helps just enough for me to know they haven't given me a placebo, strangely indocid seems to work. If I can avoid it I make do with what I can do at home. I've had it for over 10 years now and it's getting worse.
I have MS and I experience the MS Hug, I just experienced my worst one this week. The squeezing sensation is so painful, if I didn't know any better I would say that was experiencing a heart attack. The reason I say that is that is sometimes causes me to become sick, like I could throw up. I break out in a cold sweat and I become really weak, my heart races and I can't take deep breaths. This can go on for 2 hours when I get this. The hug is not constant, it will let up for a short time (2 to 3 minutes at a time within the 2 hrs.) then the pain is right back and I go through it all over again. The only way to get relief is to have my husband massage my spine. I would like to hear your thoughts.
Let me first start by saying I'm so sorry you have had to go through all the things you have had to endure by incompetent health care professionals. I too have been on disability for fibro but I also have Multiple sclerosis. Everything you have mentioned sounds like MS. I have most of the symptoms you have but they are managed with medication. The tightness in your chest that you are experiencing is what is called an MS hug. I currently as we speak am recovering from a MS hug and they are scary. Feels like I can't breath. Usually I can deep breath through them and within 15 to 20 minutes I'm ok but they are getting worse. Just called neuro and he is "out for the day" but if he calls in they'll let him know and give me a call back. Gee, thanks! I feel like I'm suffocating and they'll give me a call back. Time to find a new doc! With you being allergic to the contrast dye that would prevent them from finding any lesions on the brain and spinal cord. Let me know where you live and I can see if I can find you a doc. My private email is email@example.com. God Bless You and it's not all in your head I assure you of that.
I would be interested in looking into this further. Perhaps in the coming week, I can find some time to conduct a research dive. The links you've provided are a wonderful source as well. Thank you for listing those.
If I can find anything conclusive, I will certainly share it here or on my own blog. You're question as related to NMO is interesting to me since that was a possible diagnosis in the process of obtaining my own diagnosis.
Lisa, I have had the hug from C-spine lesions, which also affected my breathing. Many people with NMO (which was considered MS until recently) and Transverse Myelitis (which is often caused by MS) also experience this.
I wonder if you have any way of looking into this further, as there is a lot of question about this on various forums.
"This can lead to trouble maintaining normal blood pressure. Breathing may become affected if the muscles of respiration, including the diaphragm, are involved."
"The death of an individual with NMO is most often caused by respiratory complications from myelitis attacks."
Patients with relapsing NMO were reported to have a 5-year survival rate of 70%. http://www.nature.com/ncpneuro/journ...neuro0764.html
I get the "hug" when I am severely fatigued and sometimes it is an idicator that I am going to get a sinus infection. The first few times it happened (during my first exaserbation) I felt like I couldn't breathe. Once I was able to focus on the pain I realized that I could breathe fine, but the muscles in my ribs created an illusionary feeling of having tightness in my lungs.
I don't have a dx yet but have many MS symptoms. I've had the uncomfortable feeling around my torso that feels like braxton hicks contractions. They come and go and sometimes just weird stomach discomfort w/fatigue.
Before I was actually diagnosed I had the MS Hug but didn't know it then. It felt like a vice squeezing the middle of my body. I did not feel like I was suffocating at any time. Montel really gets on my nerves with his actions.