[Synnove]

hi
can anyone give me a link to a discription of a MS HUG?
thanks

[Erika]

The MS Hug: Description, Causes, Treatment, Triggers
http://www.healthline.com/health-sli...-sclerosis-hug

With love, Erika

[Lynn]

For me? It is like a tight constrictive band around my ribs that makes breathing hard. For the moment, though, I feel like I have a tight band wrapped around my arm - some days it is a tight, elastic bandage around my left leg.

Gotta love all this sensory stuff.....

[Erika]

"Gotta love all this sensory stuff....."

...Not!

With love, Erika

[jprinz99]

hug for me feels like somebody giving me a bear hug/tight squeeze and not letting go. I can technically breathe, but can't breathe in/out normally - let alone take a good, deep breath. Almost like a bra on way too tight, but in a different spot around my chest. Told my doc once "I just needed him to lift off my ribs so I could take a decent breath!"

I don't get "pain", just a really aggravating constricting feeling. Lots of people feel it in different levels of the trunk (anywhere from shoulders down to lower abdomen). Some have pain, others just a tight banding feeling.

[Synnove]

Thanks to all of you your discriptions of your symptoms.

Erika, That link was very helpful. Short and concise.
I have been struggeling with all of these.

It must be caused by MS or my terrible neuropathy. I have just recently come to think, perhaps this spasm is from the small fiber neuropathy and the outonomic neuropathy.
I have demyelinating lesion on my brain MRI that looks like MS, but after having 2 repeat MRI, ( looking for new lesions) I think the doctors have ruled it out,

[Erika]

Hi Synnove,

I've given up trying to figure out what causes mine. I'm not even sure if the MS brain lesions have something to do with it or not; but I lean toward that as a cause.

The first experience I had with the HUG was several years ago when I went through a bout of TM. I wondered then, if maybe the abdominal muscles were straining too much from me yarding the lower half of the body around; but after that bout passed, I continued to get episodes of the HUG.

Doctors have blamed it on regional enteritis, abdominal scar tissue (from surgeries), liver disease, TM, MS, autonomic neuropathy (a new Dx for me as of spring) and last but not least...emotional stress.

Mine causes pain in the lower rib area to the navel, and often refers sharp mid-back pain. Basically feels like a bear hug that threatens to crack a rib or two. It makes it hard to get a deep breath, or to get up from a laying position.

Massaging the abdominal wall and/or pressing just under the sternum seems to help some times. At other times, I use extra Baclofen; taking 10 mg every half hour until it backs off. It usually does by the time I've taken 20 mg extra, but I have gone as high as 40 mg upon occasion.

Have you tried Baclofen?
Hope that you find something that works for you.

With love, Erika

[Synnove]

Erika
I just want to say, so you have autonomic neuropathy too? I am sorry you had to deal with an added disorder. I think many of theese nervous system disorders are related. especially the neuropathies and MS, as well as many autoimmune disrders.
What other autonomic symptoms do you have? I think perhaps there could be some similar to MS?
Yes, I was wondering, when I finally get an answer to as what is causing this chest spasm, I could get some antispasmotic med.
As you could see from my post, I think perhaps the doctors by now have ruled out MS for me.( In spite of MRI lesions) But now, that I have been having this terrible chest tightness for so long, and being the fact that I was diagnosed with all sorts of neuropathies, autonomic included, I just the other day started thinking, perhaps this is my neuropaty? And if not, it must be that I have MS.
So now, I am going to see a new neuro, hopefully
I sometimes fallow you all here on this forum, you are all amazing and very supportive to each other
Erika, by the way, I am a Canadian too, just now living in the states
How is the cold weather treating you? I actually miss the snowy winters..
thanks for reading this, and thanks for all information.

[Synnove]

Hi Erika
Here is another thing I forgot to mention.
I have had some good help from a local Neuropathy support group down here. I asked regarding the symptoms of tightness/spasm of the chest. I asked if this could possible be due to autonomic neuropathy, and the president of the group, E mailed me and said Yes. I asked my specialist neuropathy neurologist, he said yes. But it seems like it stops there, I have not been able to as yet to find the supporting text for it.
But I did get reffered to a neurologist
I often get the chest tightness in the afternoons, that is the same time as my small fiber neuropathy pain flares up. So there could be a connection.
I will try today to post on the neuropathy forum, to see if any of the posters there has some information.
Stay well
Synnove

[Erika]

Hey Fellow Canadian,

I like the winter and the cold, so long as it stays above -20C. Although it does get colder than that here, my extremities can't handle it for long, so my adventures outside are brief when it gets below that.
Do you get snow where you are?
I'd miss not having it, although lately I could do with a little less than 6 or 7 months of it .

My autonomic neuropathy started with a very slow heart rate (as low as 35 when sleeping but resting at about 55 while awake),that wouldn't increase when I was walking or doing physical activity. It made me dizzy and I would have to stop for a few moments for the circulation to catch up. I had my thyroid tested because it conks out from time to time, and I need to take thyroxine, but it was OK.

Then digestion went wonky and it took forever for my stomach to empty. I also had trouble swallowing and began choking on food and some drinks. That landed me in the hospital, which messed things up more after tests and some surgery to open the valve between the stomach and the intestine. I've been on mostly a pureed diet ever since; although I can handle some soft foods that are mushy by nature, like eggs.

I've gotten used to the heart rate thing and the swallowing/digestion issues too.

Now that the days are getting shorter, I've noticed that my eyes take longer to adjust to changes in light. If I go from the dark to a lit room, my eyes burn and tear up, as though I've looked into the sun.