I have had many symptoms over the past thirty years, beginning with progressing neuropathy in my feet. I had an unusual and painful sensation in my chest underneath my breasts approximately 3 years ago. It has recurred many times since, sometimes less painful than other times. I also have severe esophageal spasms at times, and tried to think they were related, but they are very different . I had an MRI which showed a number of brain lesions, but none on my spine. An LP was clear. I am 73 years old and have diabetes and high blood pressure. Many of my symptoms can be caused by those conditions as well as age. My eldest son was diagnosed with MS at around 40, and my nephew at about the same age. My son is to the point now where he is having problems walking. I believe that I also have MS and have had for years, but it's rare to be diagnosed as a senior. My doctor is trying to manage my symptoms with varying levels of success. Would it be of any benefit to have a definite diagnosis?
Hi, I got a diagnosis of fibromyalgia in October 2012, and my neuro said that due to my many other MS like symptoms like the 8 nodules and the tremor on the right side etc he believes that a MS diagnosis is coming in the future. Over the last 2mths I've had several bouts of choking, 1 I actually went blue until my dog alerted my brother and he was able to help in time. For the last week I've had chest pain/pressure off and on, increasing to the point yesterday of thinking I was having a heart attack when the pain like a boa constrictor increased and I went to the gp. I've had an ECG and bloods done to check if it was my heart and all clear. Is this possibly my 1st real MS HUG? My follow up appt. with my neuro is next month, but I'd really like to but my mind at ease a little before then, as it was bloody scary for me and my 2 young children who were just waiting for me to die in front of them lol. Any ideas please... Thanks, Tracey.
Hi again, Amy.
To start a new thread, go to the top of the main page and click where it says Post A Question. You'll easily get the hang of it.
Your 'hug' does sound very much like the MS variety.
If I were you I'd run not walk to a new and better neuro. From what you've written you definitely meet the criteria for Clinically Isolated Syndrome (CIS). Our Health Pages can tell you more about this. And I would argue that you do have dissemination in time, because you're having new or renewed symptoms. If they're in different parts of your body than before, that's dissemination in space. MRI images are only a tool, and we cannot match every lesion with a symptom.
You need a doctor who will take some initiative and not rely on some magical formula. There are better doctors out there.
Best of luck,
ess
scroll to the bottom and click on Post a Question in green box.
Mistylee
thanks Ess,
Not exactly sure how to start a new post, I appreciate your reply. No I have not been formally diagnosed with MS. I have Bilateral Trigeminal Neuralgia since Dec 07 and some symptoms that point to MS but my MS specialist says since there is no dissemination in time it is not MS. I have multiple small foci in subcortical white matter, when I was newly diagnosed TN they did a LP which did show 4 oligoclonal bands, I have autoimmune something going on, whether it is MS who knows. I have had numbness/tingling in lips and tongue. It disappears then reappears , have had 4 brain MRI's but the lesions have not changed and there are no new ones. However in this last relapse, what I call it I developed tinnitus suddenly, my lips went numb again and all my toes are numb and tingling now for over a month. They did another brain MRI but this time included a MS spine and it did not show any lesions but there is a cord syrinx at the thoracic level. It is a growing fluid cyst inside of my spinal cord. Right now it is so small nothing is needed except watching, if it were to grow large enough I will need a shunt place so it does not damage the spinal cord and cause irreversible damage.
I am right now trying to decide if I should get a second opinion as to whether I do have MS.
The reason I asked about the MS hug is that over the last 6 months I have had maybe three episodes of extreme pressure and pain usually on right side , the rib cage only severe cramps and spasms enough that I have to deep breathe. This am woke with a stabbing pressure over my sternal area, painful like the one on right side, it took about 30 minutes to subside. In my research it sounds like a MS hug but I have no spinal lesions so not sure. Tell me how to start a new post and what should I say, an introduction?
TY so much for listening...Amy
Welcome to the MS forum. Do you have MS, or are you in the process of getting a diagnosis?
The answer to your question is not a clear one, because there is some disagreement as to the cause of the hug to begin with. But lesions and symptoms are not a perfect match, to say the least. (See our Health Pages, top right.)
Spinal lesions are notoriously hard to identify but that does not mean they don't exist. A good neuro will assume there is a lesion if his/her exam and tests point to this. The MRI is a tool, but it's not the whole answer by any means.
I invite you to start a new post and tell us more about yourself. Again, welcome.
ess
Saw your post, just had a question can you have the "MS Hug" without them finding a spinal cord lesion?
Thanks Amy
Hi ,
Boa Constrictor would fit perfect ;o)
I agree JJ "hug" is to soft and cuddly for this symptom.
Have a nice day
JibJen
I am not dx yet with MS ....
But I am very fimiluar with The Hug.
JJ I agree it should be renamed. Yes a Boa Constrictor is a very good comparison.
Hi there,
I had my worst hug in 2008, i (briefly) thought i was having a heart attack, it was only the left side (front and back), my rib cage was repeatedly squeezed by an invisible giant. The pain was immense (really indescribable) and it came in waves, each squeeze took my breath away and i couldn't hold back the sceams. It lasted at that highest pain level for hours, i'm a bit hazy on how long because it actually lasted for 3 days altogether but the pain reduced down over those days. I was frozen in place, there wasn't enough time, just enough to get my breath back and then another wave would hit me, it was horrid, fatigue for weeks after.
This year though it hasn't been the same but i still think of it as being a Hug, i call them baby hugs. There is a spot just left of centre, its weird and difficult to explain, i dont have pain, just a fluttery sensation with a brief localized muscle spasm in the one spot, apart from the odd day, its been with me since April. Sometimes it feels like my innards are stuck to my ribcage, glued in place instead of the spasm, like the spasm got stuck and isn't releasing.
I think the Hug should be renamed, when i think of hug i think of something nice and even good for you, i'm sure most people think that when they hear hug. Maybe boar hug as in boar constrictor would bring new understanding to what it can feel like, not nice at all. When its bad the only thing i've found that helps is laying down flat, my baby hugs are just there all the time so apart from knowing its happening i havent had to do anything about it.
I'm in limbo land and still have no other explanation, i've wondered how many other dx out there have this, anyone know?
Cheers.......JJ
Hello,
Thank You so much for the info! Great help, I will definately speak to him about it!!! regardless if it was or was not a hug. by the sound of it ..it certainly fits the descripio.
To Zacksmomi: Thank You as well for your insight.
It is so hard to keep track and sometimes explain these weird and odd experiences that come and go so quickly sometimes...I think the worst part is by the time you get to your appt. it is difficult to explain..
Thanks and Be Well
JibJen
Looks like yuo got some great info already. I do hope you get answers soon.
I just wanted to share that I have not had the MS Hug but my whole right arm went almost paralyed over a course of about 6 weeks last Dec and Jan.
I would feel the same type of squeezing bands and they came and went as they pleased. So I would say the MS Hug would not have to be constant for a long period of time.
Hopefully your answers will be as fast as mine.
D
It's sound like you had the hug and not the good kind.
I'm unDX as well but I've experienced this as well and it isn't fun. I would run this by your neuro when your see him next.
Here's some info on the MS hugs just in case you want it.
"How Common is the "MS Hug?"
This is hard to say. Up to 75% of people with MS will experience pain as a symptom, but statistics on the MS hug are difficult to find.
What Causes the "MS Hug?"
It is caused by a lesion on the spinal cord and is technically classified as a neuropathic pain called a “paresthesia,” which refers to any abormal sensation. The sensation itself is the result of tiny muscles between each rib (intercostal muscles) going into spasm. These muscles have the job of holding our ribs together, as well as keeping them flexible and aiding in movement, like forced expiration.
What Does It Feel Like?
Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be:
As low as the waist or as high as the chest; rarely it can be felt as high as the shoulders and neck
Focused in one small area (usually on one side or in the back) or go all the way around the torso
Worse when fatigued or stressed
Present in “waves” lasting seconds, minutes or hours or can be steady for longer periods of time
Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure
How Severe Can It Get?
Some people experience difficulty breathing or painful breathing, so severe that it is often perceived as a heart attack or panic attack.
What Medical Tests Will be Performed?
Your neurologist may want to run an MRI to see if you are having an exacerbation. Often, tests are also done to rule out other things, such as heart problems, gallbladder problems, lung disease, gastrointestinal disorders or inflammation of the cartilage between the ribs. "