last summer while out to eat with some very dear friens that i hadn't seen in18 years,
I suffered a esophageal spasm.i did not know what was happening, thought my stomach was acting up cause i'd not eaten much durning the day.kept sipping my tea,waiting for the food.but then i had this rushing train sound in my ear,said hmmm, asked hubby to lead me outside for some air,made it out the door and fainted!!of course, ended in ER, and they finally figured it out and gave the cocktail, it settled right down!
haven't had another,thank good ness, and my friends said they'd come again!!
I drink water all day now, stopped soda and iced tea,figured this could help.have you noticed triggers that set one off.and why is it when were having trouble taking a deep breath, its when we want it most? take care jen,humming
I often have problems with an esophageal spasm. It starts behind my sternum, and feels rather like the MS hug - everything tightens up, and it's hard to take a deep breath. However, I can get my esophagus to relax if I drink water... I think my spasm is MS-related, and drinking the water is the equivalent of stretching the muscle.
I have indeed wondered about "the hug" since my brain MRI brought MS into my realm of possibilities, especially since no one else has a clear answer.
I also have an old injury; we're talking 22 years, of my thoracic spine. I get this tightness around my whole rib cage; sometimes on one side or the other, sometimes the whole thing. I've always thought it was from the old injury, though I couldn't get any doctor to agree with me. I finally had a 3T MRI that showed a compression fracture of T7 that may have some marrow edema that may be a cause of persistent pain.
Still, from neurologist to neurosurgeon to Sports and Spine Medicine doctor, no one agrees that my pain is from my old back injury. Mostly I'm told that a lot of people have backs like mine and have no pain.
So, I wonder about the MS hug. It feels like the intercostal muscles are spasming and everything tightens up and burns and it hurts to take a deep breath; sometimes hurts to breathe normally. I'm hoping that my new neurologist will help me find some answers or show me where to look. Yes, I'm also hoping she'll be a good one. I heard from someone on the forum that her brother sees this neuro and she's really good.
I hope your NP can help you out, like Moki says, maybe refer you to someone that can help you get some clearer answers and help you feel better.
More hugs,
Kathy
I know it is hard not to get discouraged. Been there done that. You just have to remember that you know your own body and that something isn't right and you deserve answers. Don't take it personally if they show no interest or are rude etc. it seems that a lot of ones don't know how to be anything else. I get mad when I have one like that. I felt like I was wasting his time. I asked him if he felt he had better things to be doing with his time. After that he seemed to be more interested but I still got no where with him. Hence I moved on. If you find you are not comfortable with one, move on to another.
I have had the "hug" but as to whether it was a MS hug or not is still being determined. I find that being in the land of limbo makes it very hard to know if what one is experiencing is all in the same parcel or is it something else that is going wrong. That is why my push is on for answers. I'm tired of always worrying and wondering.
You will need a neuro, there are good ones out there according to others on here that have found one. Sometimes we just need to be patient and go through a few before we find them.
Did you call your NP yet? You should. Maybe she can refer you to someone.
Hang tight kiddo, things will look up eventually.
Hugs
Moki
my nick name is Cathy cause my catholic name is mary catherine, and my mother wanted me to be a nun.she had MS,15 years(and my age at the time) she passed away.
kathy,you did not say anything to discourage me,i'm going to try to have some of your courage and strenght.i'm writing things down now before a office visit, my doc likes to make a copy of them too,I'm thinking thats good....but shes not a nero,and sooner or later i'll have to find a good one....please let there be ONE,
sounds as if you've been on a rather rough road,i'm sorry for you on that.have you ever thought the rib pain,is"the ribs?" I'm beginning to think so,nerves misfiring causing that lovely hug sensation? hugs back,
humming4u
I have had many experiences with callous, rude doctors. I've refused to go back to many of them, have tried writing a letter of complaint, disputing false or mistaken information that was put in my chart notes. There is no way to stop a bad doctor from being a bad doctor, unless they are really bad and have too many complaints or malpractice awards against them for over $100,000 dollars.
I've learned not to get too emotional or get irate, as that just gets notes in the chart about one's mental state.
I had one guy (pain specialist) slump over like he was totally exhausted after leaving a consultation with me; he didn't know I had followed him out. I never saw him again. He wasn't helping my pain, anyway.
I've learned to research ahead of time to find a doctor that works well with people with multiple issues. I've made notes of every thing I want to cover at an appointment and questions that I want answered. I have a timeline of symptoms for my next neuro (#3, if her office ever calls).
Those of us with multiple issues deserve competent and compassionate medical care. That said, some doctors do get worn out by the constant inablility to give you the answers you need. I had one doctor that moved to Urgent Care because she burnt out on helping those with multiple ongoing issues. The doctor that I got in her place is wonderful and I've been seeing her for nearly 10 years.
I also have the lower right quadrant pain that goes all the way up under my ribs. I've been having tests forever, it seems like. I found an order for an ultrasound of my gallbladder in 1995; I had a nuclear medicine test of it done not long ago. I've had a pelvic MRI, bone scan, pelvic ultrasound; I've forgotten all the tests. All I know is that nothing really awful or deadly has shown up.
One doctor told me it originated in my lumbar spine, where I have a disc herniation. My latest neuro said that it couldn't be, that where I showed her the pain was coming from was along a thoracic dermatome.
Oh, humming4u, I don't mean to sound discouraging; I'm sorry if I do. I meant to let you know that you are by no means alone, and that if I can have the strength to keep looking for answers after all these years, then you can too. Stick around, we can support each other in our quest for answers.
Gentle hugs,
Kathy
thank you.i was to discouraged today to make the call, but tomorrow i will try to get an appointment with my NP, who I like so very much.i'm a bit afraid that she'll tell me i'm getting to many things going wrong, more then she can handle.shes hinted at this before.and i know, i'm a mess of a patient! its so hard to find and trust another one after a few really heartless ones(neros).one guy even rolled his eyes as i was talking, and shrugged his shoulders often as his answer to a simple question.instead of getting mad,i get hurt,very hurt.
have you had this kind of treatment before? if so ,how did you handle it?
I beleive, and have faith, that God gave me this tender heart,which i have been able to know i've done good with, but tender seems to open me to harm in the medical world.
my friends get mad enough for me though,sometimes one even gets mad at me,telling me,when will i value myself enough,to tel them oh, no ,your not going to treat me this way! of course, shes healthy as a horse,and in high management!
anyway, thanks for talking at me hugs back,humming
I have no words of wisdom or advice to give you but just wanted to say that I hope you get some relief soon. It's a rough road and so hard when you don't know what is going on. I feel for you so much.You should let your doc know though what is going on. Hang in there and hopefully someone who can give you some advice will be on soon.
Hugs
Moki