Is this MS hug?

[nyangel60]

Hi Everyone, greetings. About April I started feeling a tightening around my diaphragm. I figured it was the hug and took the Baclofen. It helped a bit. I had slight pain and felt at times like I could not breathe It lasted about a week. It then went away.

Two weeks now it has been back and worst this time. My diaphragm area and a bit below it feels tight and like there is a weight in there so much so I have to be lying down a lot as it's uncomfortable to stand. I took the Baclofen and for a while it went away after a couple hours but came back in the evening. Now I am having pain in the area and my back (Upper). The Baclofen is not helping anymore. I am also dizzy, burning on my body yet I feel cold and have to cover up. My feet which were always  numb are now number similar to when I had this first attack.

Does this sound like the hug and the added symptoms like a relapse? I went by my PCP clinic to see if I could get an earlier appointment and I cannot be seen until the 21 July.  The neuro I used to see I have not seen in a while as he  kept saying different things. I have my yearly appointment with the MS clinic for August 13. I am wondering though how much assessment can they make to know what is really going on as they did not order any MRis for the whole year and I have lesions in Brain, T and C spine. Maybe I am wrong I don't know.
Thanks

[pepsidoodles]

Hi, am waiting for diagnosis of what I have going on,,, and new films to be done,,,  I have 2 other spinal conditions none of which are pretty,, but the MS Hug you are speaking of I have been suffering from for a good 2 plus years now, the spasms so bad they actually dislodge my ribs, I have learned to use a yoga roll to get them back into place per my dr's instructions.....OMM dr, is good to keep the "Hug" in check,,,, but the best relief I have had for this has been Botox injections into the muscles an spine, I get 200 units from head to bottom of spine and extra around the shoulder blade area, it works better than any med they have shoved at me so far.......

3 yrs ago was told I have atrophy of the brain,,,, most recent in Dec 2014 had T1 T2 flairs show on T spine, and in April have a T2 flair on frontal left lobe, the left ventricle is swollen also always feels like that side of my head is swollen...

I am post ACDF C-spine surgery 11 months, had extreme PHN pain for a good 7 months post of, paralysis starting in Dec that come and go, whole left sided weakness going on, shingles rash in Feb 2015 to present,, waiting for clearance for new MRI films now,, just had lumbar puncture done last week, protein is 53, normal high is 45 for where it was done, dr dismissing it,,, I see new neuro on the 20th of this month an praying for help and answers...

but so far BOTOX is my friend for the horrific rib-cage pain I also have syringomyelia from C-6 to T-2 and Chiari Malformation, just a boat load of fun!

Best wishes to all suffering an pray for a better tomorrow!!!

[nyangel60]

Hi JJ, how are you? Thanks for responding. That's what I thought about the spinal lesions. I feel there are new lesions. I will call and see if they will see me earlier than August 13. I think I need to do MRIs to see if there are new lesions as these symptoms are new. It's not very painful but Im having pain in the whole torso area up into my neck and stabbing pains in both hands. This is the worst I have felt since the first attack in 2012. I will try lying on the back.

Btw, does the MS hug ever stays permanently? I hope not. My feet are permanently numb and I definitely could not take the hug permanently.

[nyangel60]

Hi Alex, thanks again. Yours seemed to be very bad. i can feel the spasms but never really looked at it. I will when I feel them again. Glad you were able to control yours. They are real uncomfortable.

[supermum_ms]

Hi there,

The MS Hug is related to spinal cord lesions and because you know you have spinal cord lesions, it's very possibly that it's the MS Hug you are experiencing. The Hug commonly happens when the intercostal muscles, diaphram etc spasm and or gets stuck in the contracted faze, kind of like other spastic muscles do but it blooody hurts like nothing else and can restrict your breathing.

I really think it is worth contacting the MS clinic and requesting the first available appointment, because the Baclofen and Neurontin is not relieving the level of pain you are dealing with and you require help and advice asap!

gentle hugs......JJ

ps one of the best tips I got was to lay flat, it helps to settle the spasm if you take the strain off your spine and can start off again as soon as you are on your feet again.

[HVAC]

If you can record with your phone or a camera to show your doctor. By the time I would get to a doctor or ER it would be over.The first one was so bad it tore the connective tissue off my ribs. I went for a heart work up.

If you have had ultrasounds you are fine. Liquid valium works instantly. It tastes bad so you will not abuse it. Mine felt like I was having the wind knocked out of me.

I do take Zanaflex every 4 hours for other MS and I stopped having diaphragm spasms. They went away after my surgery so I think mine were not MS but it could be all the Zanaflex I take. Who knows. Mine went from being every six months to every few days.I  found tylenol would set them off too.

I called two different doctors and talked to them while I was having them. You could not fake the way I sounded and not being able to breath. I had a way of getting in touch with doctors after hours. Mine never happened at normal hours. Besides I could not drive while having one. I had to take enough drugs to sleep.

Alex

[nyangel60]

Thanks Alex. I also take Xanax which is a benzo for panic disorder. I also take Neurontin. The cancer you are talking is it the ovarian cancer? If so I recently did a pelvic ultrasound. I also did an abdominal ultrasound and chest Xray. So I am thinking if there was a growth that is causing the heaviness it would have been seen. Don't you think so?

I felt real bad this morning and was going to go to the hospital but I don't think they would do anything so I didn't go. I am thinking I just have to wait the symptoms out like I did for 8 weeks for the first attack.

[HVAC]

Liquid ativan can help with the diaphragm spasms. I have them but for me they are from a very rare genetic cancer which I doubt you have. I used liquid ativan.

Alex