Shortness of breath - pons?

[jensequitur]

So I've had shortness of breath (dyspnea) ever since I was diagnosed, along with the occasional rapid heartrate for no explainable reason.  This most recent 3T MRI showed that I have a lesion on the pons and medulla - would this cause that problem?  And should I be worried?  

When I have the shortness, It's not like I can't breathe - it just feels like I'm not getting enough air.  The heartrate is a little distressing, because there's nothing I can do to lower it.  The normal calming exercises just don't work.

[rpwoodard]

Hi, I used to experience air hunger. (I don't remember if I had tachycardia.) We couldn't be sure it could be attributed to a cyst in the pons. Since the cyst was surgically drained, I no longer experience air hunger.  I wish you well with your symptoms. rpwoodard

[karryon55]

I also have a lesion in the Pons area & have dyspnea as well as tachycardia. I have had the tachycardia for a long time so that probably doesn't apply here but the shortness of breath was one of the first things that took me to the docs office.

I have also had my heart & lungs checked out a few years back & was told they are fine. I thought my breathlessness my have something to do with my chest muscles not working as well as they should. I have also had the hug on & off but not for some years now. I do also have a thoracic cord lesion.

My breathlessness is more the need to suck in air occasionally & is only on movement. It's not like my asthma at all. I had one of my docs suggest it could be neurological. It's more of an inconvenience for me too like Jen & as mine has never got any worse I am not too worried.

[Kdbarkey]

Did you Find an answer to this problem? I have had shortness of breath and. and tachycardia where my heart races up to 184 bpm for a couple of years now.  Everyone kept telling me I was having anxiety attacks but I didn't think this because I'm 39 and I've never had a problem with anxiety until I started having these symptoms and of course they brought on some anxiety! I just found out last week that I have a 7 mm lesion in my brainstem in the pons area. Just wondering if you ever got answers.

[jensequitur]

Thanks guys!  Not to worry - it really is more annoying than anything else.  I guess I'm just worried that it could get worse.  But I know that total failure of the autonomic system is very rare.

[starryeyes1]

I hope this breathing  problem stops soon. It sounds absolutely terrifying! I am glad for the information you gave.

Be Well...
Kristi

[RedFlame]

gosh Jen that sounds scary, especially becuase you don't know what it is.  I'm sorry you are going through this.

I am worried about you!!!

(((Hugs)))

Red

[jensequitur]

Naw, I just keep panting until I can get my wind back.  The heart rate is a little more distressing, because there seems to be no way I can biofeedback it back down - it just stays up.  Usually if my heart rate is elevated, I can think it down, but not recently.

Unfortunately I have one of *those* neuros.  It's a struggle to get him to recognize any symptom that isn't an obvious movement disorder - cognitive problems, hearing difficulties, breathing, he regards all of those as non-MS related.  I went to the pulmonologist to eliminate any non-neurological causes, just so I could say that I'd done that.

I've been saying for a couple of years that I need a new one, but it's easier said than done.  I feel lucky that he diagnosed me!

[RedFlame]

Jen,  I have been thinking of you today and wondering how you are doing.  It doesn't sound like you have any new info. today.  Do you have an appointment coming up soon?  This certainly warrants more investigation.  

I think I was diagnosed right after you were.  I have had several occasions where I wake up and feel like there is someone squeezing my chest.  I can't get enough air and my heart rate is very high becuase it doesn't have any oxygen.  It feels like the air is being squeezed out of me.  

It is very different that the 'ms hug' that I have experienced.  I haven't had an episode for a couple of weeks so I just figured it was just intense panic attacks.  

When you can't catch your breath do you get really scared like you are going to asphyxiate?  

Red

[jensequitur]

That's correct - a spinal lesion in the thoracic area will cause cramping along the line of the lesion around your torso.  I have 'subtle areas of enhancement within the upper thoracic cord' which essentially means I have lesions that the MRI wasn't really able to get a good picture of.  What I get is painful spasms around the torso, but rarely is it all the way around all the time.  Usually it's one side or another, or it gets my esophagus.

Usually people get themselves checked out for heart problems when they first start experiencing the hug.  I certainly did - especially after my hubby had a stent put in.  But no, my ticker's working just fine.

However, I'm pretty sure it's not tightness of the torso that's causing the dyspnea.  What it feels like is that I'm just not getting enough air.  I have to pant quickly to relieve the sensation.

[starryeyes1]

I have a lesion on the pons. My neuro believes thats why I have balance problems. I have never experienced this hug..thank goodness.

I was under the impression that spinal lesions in the thoracic area caused the hug??

Take care!!
Kristi

[jensequitur]

Vitamin levels and iron levels are pretty good - I just had complete bloodwork done to check my thyroid (which was amazingly healthy, so any weight loss problems I'm having are all my fault!)

[Heather1987]

I too have noticed this but put it down to anaemia. How is your B12 and folate levels?  My B12 was quite low and now on injections.

[jensequitur]

I thought at first it was anxiety, and I did have a couple of times when I wrote it off to anxiety.  I'm not normally an anxious person but it seemed the logical answer.

However, I've had several incidents since then, and they came at times when anxiety would have been odd.  Like right after a nap in the evening, or in the morning, as I'm trying to find clothes to wear to work, or washing dishes.  Or even late at night, waiting for hubby to get home, and playing Bejeweled on the computer.

I thought that orthostatic hypotension might have been the problem - and for a couple of months, I did have orthostatic hypotension.  But it's gone now, and I still have problems with dyspnea and heartrate.  And not all of those are immediately upon standing.

[RedFlame]

Hi Jen,

Have you been feeling scared or a bit nervous after your dx?  I can't remember how long ago your dx. was.  I was initially really anxious after having dx. confirmed.  Could it be anxiety since other things have been ruled out?  

Anxiety can make your blood pressure go up as well as respirations  

Just a thought.

Red

[jensequitur]

When I first started having the hug, it manifested as a pain in the center of my chest.  My first thought was angina, so I went and had it checked out - but everything's working just fine.  Normally my blood pressure is quite low, (100 over 60) and my heart rate is around 70 bpm.  But when I'm having these weird elevated bpms, it's around 90 to 120.  

[Sumanadevii]

I am happy you visited a  pulmonologist  Have you also had your heart checked?  I too have legions in that region and have shallow breathing.  Those are the places I was sent to be sure I didn't have another problem working.

[jensequitur]

Thanks, michelle!  This was bad yesterday - better today.

I should say I've already been to the pneumologist (?) to check airflow and everything seems find, although my expiration is a bit weak.

[michelleislay]

wow, i can imagine that this must be totally distressing!  

wish i had some answers, but sure hope someone else does,

good luck jen,

michelle