Is there such a thing as an MS Hug??

[Jojuli]

I have been diagnosed with MS for two years now and have various symptoms. Was put on Copaxone for 18 months and was experiencing severe depression on it. My neuro denied it caused me depression, but inside I just knew I behaved differently on Copaxone. I have been off of it for 3 months now and the depression has lifted. What a relief.

I am currently not on any drug to reduce exacerbations. The neuro said to see how I do and see him in 3 months. I was furious. I am 44 years old raising two children alone. I felt very vulnerable and wanted to get a second opinion. The symptoms I have been having are paroxysmal symptoms, vertigo, extreme fatigue, muscle weakness. I mean it feels like all my organs weigh 25 lbs each and a strange feeling of energy in my head. Not ringing in the ears just a piercing tone that completely debilitates me. I also have the worst tightness in my left chest area, just one section and was told by my first neuro it was an MS hug and gave me Baclofen. ( I had an EKG and heart checked out ok). The chest tightness and squeezing got so bad after 5 days I went to the ER. There I was treated like a drug seeker. They did a 12 lead EKG and it was normal. Then my whole body started to spasm. The spasms lasted for 30 to 45 seconds then release. They gave my Ativan which calmed down the spasms but did not relieve the chest area pain. They wouldn't even give me an Ibuprofen to get some pain relief. The ER doc said it was only my perception of pain and needed to see my psychiatrist to get on meds. No explanation and no help. I felt like an idiot. They discharged me still being in pain on my left side with no further tests.

Then the thing is I saw the second opinion neuro today and explained all this to him and said he has never heard of an MS hug in all his years of practice and that my symptoms are probably migraine headaches not MS. WHATTTT???? He dismissed all the other symptoms and said my chest tightness has got to be cardiac. I am so frustrated. I cannot work because of these symptoms and I never, never thought I would have to fight the medical field to get help. How do you cope. I want to scream. Has anyone had such an experience?

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[SNOOPY]

Hello Jojuli,

Yes, the MS hug is real. Here is some information on the "hug"

http://www.msrc.co.uk/index.cfm/fuse...ow/pageid/1418

[mjan]

Well sorry for ALL you are going through. But this doc saying what he did..geez. Is he anm MS doc?

YES the MS hug is real. Ok others may call it costochondritis and such. I think its my worse symptom. Mine can start on one side.. or mid back then wrap all around with the worse tightening spasm that it takes my breath away and stops me in my tracks!!

Now I wear a wrap around back brace that you can adjust with an extra strap. its a lumbar brace and the drug store has it. AND I use Methocarbamol as its a milder less drowsy muscle relaxant. AND Ibuprofen helps. Now that I am on Baclofen I use just that and my brace.

I would get a different doc for sure.. gee..

Let us know how you are doing hon.. HUGS

Warmly, Jan

[Jojuli]

I looked up the internet site under The Multiple Sclerosis Resource Centre and there is was an explanation of everything I experience. The MS Hug. My question is what are the docs reading? The neuro actually said in regards to the MS Hug " I don't know what you are reading or who you are talking to but I have never heard of it". Thank you for making me feel sane and acknowledged. Oh and as far as the vertigo goes he also said that was not MS either, it was a migraine. I have never had a migraine in my life. I just want to be positive tonight so I won't go on. Just thank you so much for responding to me.

[MrsBones]

There definitely is something called the hug, though I'd love to smack who ever named it. I like to think of it as the MS Grip of Death.

It, along with vertigo, are very common MS symptoms. Any neuro should know that. ER docs? Unless you're also having a heart attack or bleeding to death, they're not very helpful for MS stuff. It's just not their thing. It's a relatively rare disease they would have little experience with.

Even among doctors, there is misinformation. Especially when they are going outside their field. Look at the infamous Dr. Oz MS hug comment. We have to become amateur neuros ourselves and know when we need to push further for answers or seek help from someone else.

[JMom]

yes there is an ms hug

26 yrs ago when i was dxed now 46 that was one of my 1st symptoms besides a couple more. Back then the knew crap, it wa all in ur head or so they thought. I still get the hug whe i have an exacerbation or really stressed. I truly believe the docs know nothing about ms b/c research$ does not go into it enough.

[Jojuli]

What was the infamous comment that Dr. Oz's made? You just don't know how relieved it makes me to have what I am experiencing acknowledged as real. But on the other hand I am so disappointed with this neuro on his education with MS. I actually chose to see him after going to one of his MS lectures. HE LECTURES others on MS. I am just going back to my original doc. His bedside manner is horrible and is impossible to reach. I could never get a phone call to him and to get an appt with him takes 6 months but he is an MS researcher and has always told me I get the MS hug. You know it is so hard to do the best for yourself. This disease is vicious and so many of us just want relief. I find that mostly through others who have the disease. Thank you.

[MrsBones]

What was the infamous comment that Dr. Oz's made?

A couple years ago, now, there was an episode of Oprah with "courageous people" "battling" various diseases. One of the people featured was Montel Williams. IMPO, it was a joke that set back public opinion and knowledge of MS by about 30 years, but I digress.

Dr. Oz had some info to provide on MS. One of his nuggets was that the MS Hug was fatal. I believe he might even have said it was the leading cause of death in MS patients, but I could be remembering that part incorrectly. It caused such a stir across the MS community at large, the NMSS actually had to make a statement on their site to reassure people that it was only a sensory/ muscular issue and while uncomfortable and distressing, not at all fatal.

[Toomnyhats]

Yes, there is an "MS hug". For me, it feels like an internal coset. It wraps around my ribcage, directly beneath my breasts to the bottom of my ribs.
I am most comfortable if I sit up very straight (so is good for my posture!). The pain level ranges in the discomfort level, never enough to seek any kind of medication, even OTC.
It worsens with stress and was one of my earliest sx.

[Shandi]

The MS Hug does exist and it is a nerve/sensory phenomenon. Some doctors make know the phenomenon, but not the commoner name for it.

Depending on the jargon you use with a doctor they will not listen to you and label you psych case. When you use medical jargon, in particular, they feel you are looking up information and having psychosomatic symptoms.

Anyways, a MS Hug is NOT costochondritis which is an inflammation of the breastbone where the rib meets the cartilage. This happens a lot in those with autoimmune joint disorders like RA and Lupus. It feels like a burning, stabbing cramp in the middle of your chest. Costochondritis, in itself, does not cause the ribcage to tense up...but the panic when you think that pain is a heart attack can cause some tension!

I had it before, went to the ER and they kept me in the cardiac unit overnight for observation. When they did an xray over night they say the little inflammation bubbles. But because I have RA, I am more likely to have heart issues so they were being safe.

[Jojuli]

I found more info on MS Hug

I found this on the National Multiple Sclerosis Society's site describing the MS Hug. It is so nice to have what you are feeling acknowledged. Here it is:

The National MS Society provides the following information about treating chest hug at nationalMSsociety.org:

Burning, aching or “girdling” around the body are all neurologic in origin. The technical name for them is dysesthesias. These pains are often treated with the anticonvulsant medication gabapentin (Neurontin®). Dysesthesias may also be treated with an antidepressant such as amitriptyline (Elavil®), which modifies how the central nervous system reacts to pain. Other treatments include wearing a pressure stocking or glove, which can convert the sensation of pain to one of pressure; warm compresses to the skin, which may convert the sensation of pain to one of warmth; and over-the-counter acetaminophen (Tylenol® and others) which may be taken daily, under a physician’s supervision.

There is also a short video clip from a doc explaining the MS Hug and how it is an MS symptom. Hope this will help anyone. I would not anyone to experience the doc visit I had. It is real and for me debilitating.

[Michael Reck]

As you've heard the MS "hug" is real. My wife suddenly got it one night and could barely breathe. This was before we knew what it was. The ER docs said it was Pleurisy or water on the lungs. even though the X-Rays showed nothing.

The medical term for this condition is intercostal neuralgia and it does feel like a big bear hug.

She's found that a heating pad immediately on the chest and a strong pain reliever (vicoden) help and stops the hug in minutes. The vicoden probably does more to relax the muscles than actually relieving pain.

Just my 2c.

[Imagine]

Absolutely

Hi Jo. What you've described happens all of the time. 1st and formost, I would encourage you to avoid ER physicians if at all possible. Should you have to go to the ER, demand that a neurologist be paged b/c you have ms. Unfortunately, far to often more harm than good is done by ER drs when dealing with autoimune disease.

I think it is safe to presume that you are not seeing an ms SPECIALIST??? I cannot imagine a specialist telling you he'd not heard of an ms hug I have experienced it and saying it's uncomfortable is an understatement. Please go to the site that the kind soul suggested b/c it will give the technical name for the sx. Print the damn article and deliver it to the neuro who said such a stupid thing. You, and anyone with ms, need to see a specialist, at least once. I was seen by a speciast once, in another state. She agreed to work in conjunction with my neurologist so that I could be seen locally. I was seen at the medical college of Georgia. The specialist and 3 residents spent over 3 hours with me--My questions were answered and I wasn't rushed.

Look, this disease is so unpredictable--that unpredictability is the only thing that you can predict I am sure the reason you were told copaxone wasn't related to your depression is b/c interferons, like rebif, do cause depression. Copaxone is not an interferon and doesn't have the compound that would cause endogenous depression. What DOES cause endogenous depression is MULTIPLE SCLEROSIS--secondary to where the lesions on the brain are. Regardless, everyone's body is different and only one person can tell you how your system is handling a drug, and that is YOU!

We have to be our own case managers. Arm yourself with as much knowledge and information as you can. Doctors are like everyone else--some are great; while others are ignorant to the point of being incompetent. I take copious notes when I have an appointment... before, during, and after; and I have 2 large binders that I keep articles and info concerning ms and other autoimune disease. I am so sorry that you were treated in that manner and, basically, dismissed. When we feel awful, we also feel fragile; and for me, personally, respect and kindness carry a lot of weight. I will not tolerate disrespectful treatment from a physician- not anymore. Remind him/her that you are the consumer. Point out the hip oath has been violated; you know, "do no harm?"

You are not alone. This site is here. Contact your local ms chapter. I can promise you this as well, any complaint that is made to the medical board is investigated and the dr is always questioned--I am a psychologist and I have seen more than 1 dr almost wet his pants at the mere mention that he/she might have a complaint lodged against jim/her.

I know it's so damn hard... so hard you cannot find words for just how hard it is. Hold your head up with the dr-and lean on those who love you. Keep us posted and let us know the status of... you.
Shalom,
Suzanne

[Jojuli]

Suzanne, How kind of you to write what you did. You gave me a soothing balm on a very open wound. This neuro told me he was 99% sure that my chest pain and horrific like grip around my chest was cardiac. That it was not neurological. Every symptom I expressed was dismissed as something other than MS so I was sent to a Cardiologist yesterday and she examined my heart thoroughly. She said this is your MS. Your heart and blood pressure and EKG were all normal. And my chest was hurting when she examined me. I was relieved to actually get acknowledged from a person in the medical field. I know my body, I know what it does to me.

This disease is a mystery and yes, very unpredictable ALWAYS. Symptoms come on mysteriously and then when they feel like they disappear. I only went to the ER because this last bout of intense pain and pressure twisting and wrenching in my chest was too much and I let it go on for 5 days before I couldn't stand it. I called the neuro who said it was cardiac related and then my PCP who said call 911. I listened to the medical community I put my trust in. I was scared and utterly exhausted from non-stop pain so I did what they said. I mean I did not want it to be my heart. So I went to the ER. Now I believe I had an exacerbation and not being on a preventive med for MS I am scared of that.

After the ER visit, on my appt with the neuro, I asked if I could try Low dose Naltraxone and he refused. What more could I say? I was weak and shattered, no match for the doc in that state. I simply could not stand up for myself or say a word at the time. He told me he only allotted me 15 minutes for my visit and I took up almost an hour of his time which would be hurting his other patients. That made me feel like a jerk and responsible for his other patients. I just walked out sad. Now that I saw the Cardiologist and she confirmed my chest pain is not my heart I got in touch with my local National Multiple Sclerosis Society chapter and complained. This neuro gives lectures on MS and symptom management. That is how I first met him. He seemed to know so much. What's funny is that the MS Hug is all over articles that the NMSS puts out and other respected organizations directed at Multiple Sclerosis. I am glad to know I am not crazy. Thank you again for your insight and helpful words. You made a difference to me.

Jo

[Imagine]

Thanks for the update

Hey Joe. I was so glad to read your post, as I have been extremely concerned about you. Although I am happily married now, I know what it is like to be a single mother with this disease. I also know what it is like to be dismissed by medical professionals when you would do almost anything for some relief from pain. The first year following my diagnosis, I felt more alone than I ever have before. I survived by having the mantra, "one breath at a time." The thing is, I did not have to be alone--I just did not realize it. I am quite sure you can relate to that feeling of no longer belonging I often felt very sureal and was sure I was dying.

I am so impressed that you reached out and basically said that how you were treated was, and is, unacceptable. There really is strength in numbers. It truly made my day when I read that my post had been of some help for you--thanks so much for letting me know that; and much thanks for helping oh so many by sharing your plight and following up with how you resolved the issue. As my adolescent patients tell me, "you go girl"

Look, as hard as it is, when you are feeling at your worst and completely misunderstood, talk to someone; come to this forum; learn and practice saying, "I need." That is still very difficult for me to do, but I take the leap and say it now. Please remember that your life can change in a mere second; mine did. Yes, I get really depressed at times and the unpredictability of the disease causes me to want to scream... but things are so much better now than they were at this time last year.

One more thing: I have found out what I am made of. I can tolerate what I would not have thought I could. I have the distinct impression that you are finding that out as well. So... you are more than welcome sweetie and, THANK YOU!!! Please continue to keep us posted--you are helping so many who are in similar situations. Love and Light. Be Well.

Shalom,
Suzanne