MS Hug?

[Gabriella7]

Anyone here have this symptom? Tomorrow I will see a cardiologist and the next day I'm having a gall bladder ultrasound as my new PCP is interested in ruling in or out any other problems. I've had this tightening around my rib cage off and on for the past year but it is becoming more of a constant companion. It is getting harder and harder to take in a deep breath. I would like to hear of your experiences if you have had this symptom and what did your doctor do for it?

Dx'd with Progressive/Relapsing MS-2000
Avonex-9 months until immune system crashed
Symptomatic treatments as present

[Cat Dancer]

It's good that you're taking care to rule out all those other things...and assuming there is nothing else wrong,

then yes, it could be the "MS hug" -- a banding, muscle contractions, of the muscles that run around your body (rather than length-wise, like up and down an arm or leg). The banding sensation often occurs around the torso, like you're experiencing, and indeed it can feel like breathing problems, or heart or gall bladder. Generally the internal organs aren't compromised, but just feel like they are. That is, breathing really isn't affected (people will go and have breath tests that prove this) -- it just feels like you're not getting a complete breath.

Sometimes, once someone realizes that it's the "MS hug" and not something more serious that is affecting the breathing, for example, they're able to relax and breathing becomes easier.

The "MS hug" can affect you your torso, diaphragm, around your upper arms, around your skull -- wherever there are muscle groups that go around you "horizontally".

I hope that indeed it is "just" the MS hug, and anything more serious is ruled out.

[Gabriella7]

Thanks Cat Dancer, The cardiologist wants to do a adenosine nuclear stress test on Monday. Tomorrow, I go for the Gall Bladder ultra sound and if it turns out to require surgery, the cardio said I would need to get the heart checked out ahead of surgery anyway. The big question is "Is there anything in the way of pharmaceuticals to treat the MS Hug?

[Cat Dancer]

Some folks find the usual drugs for spasticity, like Baclofen, also help with the hug, and neurontin, prescribed for neurological pain, sometimes help.

(I can't be more specific, as I've never taken any meds for it..or spasticity..)

[AmyGrace]

Hi,

I'm so sorry for your suffering. The MS hug sounds like what you've got, and I have it, too, and know how terrible the banding can be. I call mine, which affects only the left side of my torso, my 20-foot shark bite because that's what it feels like when it's flaring up--this attack never remits. I also suffer from the hug all the way around my upper chest and head, but these attacks remitted and flare up only occasionally and never as bad as the first, initial attacks.

I take LYRICA, and it saved my life by preventing me from chopping off my head, literally. It's very new to the market and expensive so hopefully you have insurance. Ask your doc to let you try this, and don't wait for a previously scheduled appointment to arrive; just call up the office and tell them your banding is flaring up and for them to call into your pharmacy LRYICA.

I am on quite a high dosage, but hopefully the flare will ease up soon like it has before. I take 900 mg daily, 3 100 mg pills 3 times a day, and it's verrrrrry high, so high I can't believe my doc wrote the prescription. If it stops working, I know we will have to switch to something different <sigh>

Best of luck,

~Amy

[Abigail]

I sure can relate to what ya'll call "the MS Hug"
I was at physical therapy this morning and mentioned just how bad the spasms were around my chest and my therapist made a few suggestion as to how to release to spasm. If you take a towel and make a small roll out of it. Place it on the bed where on your upper back the spasms are and just lay there and relax it will release the tenseness of the spasm. If the towel hurts where you put it you have too many rolls in the towel. You can also roll your shoulder back, placing your arm close to your side. Hold in this position and relax for a while and this too will release that tension. I was amazed when it worked!! And thrilled because I have this "hug" the majority of the day.
Hope this will work for you.
Abigail

[Gabriella7]

Thanks a bunch! I was taking the Lyrica and titrated up to only 300mg a day but began to be very weak and unbalanced!:eek: Not mentally, of course, but walked like a drunk. It is hard to tell if it was the Lyrica or the MS. Anyway, I decided to taper off the Lyrica and the side effects are better BUT this symptom is still present. I have one of the vibrators for the whole body and I'm going to try the towel rolled up treatment.

[Sandshoe]

I had similar problems, was treated by my GP for three years for anxiety!!! Finally the pain was insane, she wanted me to see a cardiologist, but ended up at emergency where they tested my heart anyway. Ultrasound the next day found a gallbladder overflowing with gallstones. Amazing fix having that out.

Still occasionaly have a similar pain (not nearly as bad as the 8 hours of pain from my gallbladder - started off at 15 minute to half an hour) I have started on a med called Epilem in Oz as we can't get Neurotin for MS here! It seems to have stopped the little left over pain - I think I must have had both!!

Best of luck, I would be interested to hear whether they found anything!

[Gabriella7]

I will update this post but I don't really have any firm answers yet. I cancelled the Adenosine Heart Scan after reading the potential for a fatal heart attack, heart block, etc. I was on so much medication that could be contributing to problems that I have tapered off a lot of it.

Had an appointment scheduled with my endocrinologist (diabetes & hashimoto's thyroiditis & hypertension) on Monday and we talked about the blood pressure meds I had been given. One of the side effects of one I have been on for the past five years is "substernal chest pain" as well as "neuritis". I found this by doing a "google search" and told him about it.

He changed the medication that might be causing the "MS hug" and so far so good. I haven't heard from the upper abdominal ultra scan but the tech told me she didn't see any gall bladder stones.