Diaphragm Spasm

[HVAC]

Oh god the pain is unreal. Another spasm. I have taken five pills with no effect. Usually I fall asleep at this point but the pain is so bad. i really wish this was fatal. I had my last attack fourth of July weekend. My Doctor was sympathetic but ar a loss,. May be I will fall asleep.

Alex

[HVAC]

Kimber

Yes you are describing them. I tried Xanex which helped but I had to take more and more which can cause seizures. Mine lasted sometimes a couple of hours. I started having them every two weeks. Mine happen when I exert a lot and then rest. I sit down and relax and bam. They told me they were anxiety attacks but I was not upset about anything. They are myoclonic spasms. Once the doctors figured out what they were no one knew what to do about them.

If I do have one I lie on the ground very still with my hands over my head. This helps relax the diaphragm.

I went to a pain clinic. I am now on a cocktail of medications that help. I take Zanaflex and trileptal 4 times a day. I have to stay away from drugs like Oxycodine because they set the spasms off. I have not had a full blown one in a long time. Now it is just faint and I take a Zanaflex and it goes away.

Alex

[kimber394]

I was just looking up diaphragm spasm and came across your post.  It sounds so much like what I go through probably once or twice a year.  I was diagnosed with MS 5 years ago, but these "episodes" have been happening longer than that.  Does your pain come in waves that last about 20-30 minutes and then go away for 5 minutes or so, only to return again about 3-4 times?  Also, I tend to go sheet white after the pain stops and I'm sweating profusely.  It mostly happens at night.  Does this sound familiar?

Kimber

[HVAC]

Deb

Your symptoms sound bad to spasms of the esophagus are very painful.

Mine come from pushing myself too hard. I am not near as active as I used to be.I used to work all the time and sleep little. I sleep these days. I do a lot of political advocacy and ride horses and work in the yard and train Service dogs. I just do not know where the line is. Sometimes like this week,

This week my advocacy has brought me in direct line with what is going on in D.C. so I guess I am more than a little anxious. I have had to write about it in depth so I have been under a deadline to understand it and write about it. But most of my advocacy is intense.
I get empowered by it more than anxious.

I have several  attacks a month. This one was bad even with the medication, I still felt the pain.

I called my Neurologist about it last November so my first appointment with him is in August, nine months later.

I have been on the phone with two different doctors and a nurse during 4 of them and all could here it and were at a loss. If I had gone to the ER all they could do is knock me out and that is what I do with medicines.

I feel terrible for my husband he feels so helpless and scared.

My burns are third degree but so far not infected. I have had many bad burns. I use 2300 degree torches to braze copper for my work. Being up several stories on a ladder while doing it you burned yourself.

At the first sign of infection I will take action. Ironically I tolerate pain pretty well.

You take care.

Alex

[Deb61]

This is insane!  I get spasms in my chest, too, but they do not last that long.  I think mine are triggered by stressful situations.  When I try to get rid of them it makes them worse because my body fights them like crazy.  I try not to panic because it causes me to not be able to breathe.   I've been to the doctor years before my MS diagnosis and before they got very severe, and was told it was esophageal spasms (I've been hooked up to the EKG, etc. etc.)   For a while I thought that this was what it was, but it doesn't happen when I'm eating or drinking, so I'm thinking it's something else.  

My latest theory is that it's the MS hug.  I just don't know.  I've told my neuro, but he simply writes it down in my chart.  The longest one I had was an hour and a half.  But they typically last about 20-30 minutes.  I can't imagine them lasting longer.

If you ever figure out what it is, let us know.  It sounds similar to what I am experiencing, but it could be something very different.  I haven't had an episode, thank heavens, in a couple of months at least.  

How's your burn?

[HVAC]

I am working on the SSDI.A lawyer who works for the Governent said at this point I do not have a prayer. I need to go back to work for awhile. I talked to my Doctor during the spasm she said there just is not anything else she can do I have to talk to my MS Specialist next month.

SSDI won't solve the problem. It is just so rare no one knows what to do.

It starts with spasm in my neck and shoulders then it is as if something is squeezing the life out of the middle of my chest under my rib cage. Then it is as if the wind has been knocked out of you and it continues for hours. Then the contractions start if the medicine does not kick in. The contractions come every few minutes. I sweat profusely. With out the tranquilizer which melts under my tongue the contractions are so violent I just do not want to fight to breath. The connective tissue in my chest gets pulled and with out the medicine it tears. It takes several days to recover and without the medicine several weeks.

I can honestly say there is no pain like it. The neurologist upped the baclofen but that is like drinking water to me.

They have ruled out my heart, pancreas, and asthma. It happens when I get hot or overexerted.

Alex

[Karen99]

Does it feel as though you have the wind knocked out of you in addition to the pain/spasm?

[Karen99]

Those spasms sound awful.  

At least file a claim with SSDI.  That gets the clock ticking.  It takes two years from the date of filing before Medicare will kick in.  Obtain an SSD attorney and save yourself the headache of trying to do it yourself. Most of what they do is push paperwork.  

Hope things calm down for you soon.  

[essdipity]

Alex, has any neuro actually told you you have benign MS?

That's insane. Besides, I don't think PPMS can be called benign, regardless.

I really really wish you would pursue the SSDI route again. That could cost you time and aggravation, but it's free, after all, even if you get a lawyer involved, since they take their cut from the proceeds. And there will be proceeds.

You really need more and better medical options, and since SS disability designation is the route to timely Medicare qualification, that's your only option. Otherwise it'll be a zillion years before you can get Medicare. I know, I know, the whole SS and Medicare systems are in jeopardy, but nothing will happen tomorrow. If you're part of the system, it's better than not being a part. The whole deal was designed for people such as you.

Okay, I'll stop nagging now. But I do hope you'll reconsider.

ess

[cheesymum]

I just saw this and I realize you are feeling better now but I wanted you to know you are in my thots and prayers.  I hope tomorrow you feel a ton better and your hand doesn't give you too much grief.

Many hugs!

Be well.

[supermum_ms]

I feel so crappy for you, its so not fair your dealing with so much pain, I really do hope there's something they can do for you!!!!

HUGS............JJ

BTW benign my A$$!

[HVAC]

Well I burned my hand badly. I was so out of it I picked up the handle straight out of the oven with no pot holder. I iced it immediately for a half an hour. but too late. I was so hungry and feel better now that I ate. I put oral gel on it but the pain is too great.

The spasms which were the worst pain ever are gone through. At least my Doctor sees they are real. She could tell by my voice.

If my MS is benign I hate to see real MS.

Alex

[HVAC]

I did fall asleep fort two  hours. I now feel like crap. I feel better but, Sick to my stomach and really drunk and nauseated. Well at least I am cooking dinner.

Alex

[Lulu54]

wow, Alex,  this sounds unbearable if you are pushing that many pills with no relief.

I can't even pretend to know a suggestion for you other than seek medical help, again.  One of these times a doctor might actually be able to help you.

hugs, L

[Sarahsmom46]

My heart's with you Alex.  Would you reconsider the NIH?  They might be able to put you in touch with someone who can help you find a better solution than the medication.  Your doses to handle this are getting higher and higher.  Hang in there. Wish I could do something more to help.  

Hugs!! Gentle ones.

Julie X

[Sumanadevii]

Sorry for your suffering HVAC.  Hoping it gets better soon.

[Deb61]

((((((((Alex))))))))),

I am sooooo sorry you are in this kind of pain.  I know there is little you can do about it.  Is there anyone with you to help you?  

Please don't take anymore medicine, Sweetie.  This too will end, like the other eventually did.  Sending prayers and well wishes your way . . .

Deb