Breathing issue

[oreos23245]

I am having a breathing issue. After going to my regular doctor, he thought asthma and put me on a low dose of steroids. After a week I was still gasping for air sitting, walking, standing, or sleeping, so I called my Neuro. He got me in right away and ordered a MRI. The MRI concluded a new lesion on my spine. He has determined a MS attack and put me on a very high dose of steroids. I am not now scared. What happens next? Does the breathing go back to normal? Anyone out there have gone through this? Will I need an oxygen tank to function? I am seeing a pulmonary specialist and a asthma/critical care specialist also. Any insight would be great.

[DebbieB]

Hi Oreos,

I'm sorry you are going through this. I've had these issues before - I have both asthma and MS. Many of my previous episodes have contributed to increased problems with breathing function.

The good news is that I've gotten through all of them just fine without oxygen. I've learned to expect them and know when the symptoms start I need to seek help from not only the Neuro but the Pulmonologist as well.

I now stay on maintainence asthma drugs continuously.

Good luck...hang in and keep us posted!

[KatW]

Hopefully, the higher dose of steroids will help with your breathing. If you are still having symptoms by the time you see your specialists, there are many tests that they may order to diagnose the problem. The tests may include chest x-rays or lab work. Having shortness of breath is not always an oxygen issue. I know I felt short of breath with my first big flare due to weakness around my chest and abdomen. It went away as my flare resolved.

Please let your doctor know if it gets any worse. Keep us updated and I hope you feel better soon!

[KatieAgain]

This is scary as all hell...because I have been through it. And I got to spend a week in the hospital recently over it. That lesion is probably strategically located and it is affecting your lungs.

The steroids will help with the inflammation which should help with the breathing. The biggest thing you need is a DMD, because that lesion needs to heal and go away. Being a new lesion is a good sign.

Thing about spinal lesions, especially cervical lesions...they tend to go away. Mine did, and I have had three sets.

I sure would like to know what DMD you are on. Hopefully you will come back to this board and answer that for me and I will check back periodically.

[oreos23245]

I have now taken my 5 days of steroids. Lets hope for the best. I would like to get back to life. I miss exercising and being active. It still scares me. Not the worse I've had, but the most long term it will be burden.

I am currently on tecfidera. I have been on tysabri, rebif, avonax.

I am also taking amprya to help. That was working great until the attack.

[KatieAgain]

I have now taken my 5 days of steroids. Lets hope for the best. I would like to get back to life. I miss exercising and being active. It still scares me. Not the worse I've had, but the most long term it will be burden.

I am currently on tecfidera. I have been on tysabri, rebif, avonax.

I am also taking amprya to help. That was working great until the attack.

I would be having a serious talk about your DMD and possibly go back to TY for another year to see if you can zap that lesion.

Like I said previously, I have had three sets of C-Spine lesions and they all healed. 2 off DMDs. One on TY.

You absolutely have to rule out asthma and COPD first though...because it might not be the MS. That has to happen fairly soon. If everything is happening strictly because of the lesion, your Neuro must treat aggressively.

Your breathing will hopefully return to normal and that lesion will go away. Good luck to you and I hope the docs figure out the exact cause.

[oreos23245]

I am feeling better, but still gasping for air. I am in pain and exhausted by the end of the day. I'm hoping this is one day closer to normal.

I cannot go back to Tysabri. I tested positive for the pml virus after a year. My Neuro didn't want to risk it and took me off. I will go back in about three weeks to discuss options, since my Neuro was not impressed with this flare up and wants to make sure the tecfidera Is helping.

[KatieAgain]

I am feeling better, but still gasping for air. I am in pain and exhausted by the end of the day. I'm hoping this is one day closer to normal.

I cannot go back to Tysabri. I tested positive for the pml virus after a year. My Neuro didn't want to risk it and took me off. I will go back in about three weeks to discuss options, since my Neuro was not impressed with this flare up and wants to make sure the tecfidera Is helping.

You might want to get retested for JCV. The test is free. They now have titer numbers now...you might be a low positive.

But you truly need to hammer out if that lesion is indeed causing your breathing issues.

I too hope your breathing gets better.

[Michelle Lazansky]

breathing issue normal

I am sorry that you have to go through this. I have breathing issue due to poor muscle strength. According to my last pulmonary function test in April, I only have 30% saturation.

I am going to rehab to maintain what muscle strength I have and she showed me to use my diaphragm to breath. It is hard! But I get more air into the blood and work my muscle at the same time. I have PRMS and after all these years am constantly learning something new.

[CMRN]

Have you been evaluated by a cardiologist?

[oreos23245]

I have not been evaluated by a cardiologist. I am not sure what to do next. I am not sure when I call and complain. I have had flare ups in the past, but this one keeps going. I feel the ms hug by the end of the day. My feet and legs are tingly now too.

I am stressed about this and afraid to sleep. I have woken up gasping for air. Both are probably causing my symptoms to stay bad.

[KatieAgain]

I have not been evaluated by a cardiologist. I am not sure what to do next. I am not sure when I call and complain. I have had flare ups in the past, but this one keeps going. I feel the ms hug by the end of the day. My feet and legs are tingly now too.

I am stressed about this and afraid to sleep. I have woken up gasping for air. Both are probably causing my symptoms to stay bad.

Your Neuro should be hooking you up with a Pulmonary Doctor and a Cardiologist. Like I said everything has to be ruled out before the lesion can be blamed.

No one can tell you to stop stressing...I have been in your position and you will worry. But you do need sleep. I take meds to sleep...50 mgs of Benedryl actually...but you absolutely need your docs approval to do this. Also put a night light in your bedroom. Believe me it helps.

Tomorrow, you need to make some phone calls and get some appointments set up.

Keep this in mind...I have been through this three times because of spinal lesions. And all three times the lesions disappeared. Yours probably will too. Hang in there and get out there and get some answers.

[sunbeam1]

breathing issues

I have the same thing...local doctor treated me for pleurisy sp but still can't breathe feel like someone sitting on my chest though he says my lungs are clear. Gave me medicine prednisone. Five days later still no better. I am calling my neuro tomorrow morning and going back to Hanover NH hospital. (Dartmouth) Hopefully, I can get meds to help me breathe can't do anything without tiring local doctors amaze me with what they say even though they know you have MS.

[oreos23245]

Ok, it is July and still my breathing is not back to normal. I am frustrated about this entire thing. I so want to get back to the gym and doing everyday things without an issue. Anyone been put on meds? See anyone else for a ms breathing issue?