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Living with Polyneuropathy CIDP, GBS, & CMT

Shortness of breath


#1

I have shortness of breath that effects only one lung, my left lung. I've assumed it was CIDP, and brought about by demeylinaiton of the phernic nerve, that being the common denominator with CIDP.

Do you have SOB in one lung, both lungs, and is it mediated by any CIDP treatment? After IvIg, I have strong breathing until I relapse, if I relapse.

I swim 2 miles, regardless of the state of my lungs, however my wonky left lung is really a burden on the system when I am in relapse... as is my incurable foot drop from CIDP, as are my stiff muscles, but I swim with those problems and I oftentimes seem to swim over the pain/stiffness and feel relaxed, (self cured or just exercised into pure fatigue? )

My new neuro has me scheduled with a pulmanologist to determine if I have a collapsed lung?

But, I told him repeatedly that the IvIG treatment eliminates the shortness of breath, the problem in the left lung, etc.

What should I do? He is the only neuro (for my new HMO) on Maui. It is their dime, my co-pay is $15, but I wonder about this guy. He says he's had CIDP patients, but so have my past six neurologists... but this being a rare disease, and they are all under 45, so the math is wonky to me! I'm thinking I'm getting the standard answer when asking about medical experience and neuro knowledge. It is a rare disease!

I think Florida may be the answer!!!


#2

Why do you think Florida is the answer and where in Florida.


#3

I get shortness of breath too. How can you tell it’s your left lung? I’m guessing mine is both lungs. I’m also getting this weird blood pressure thing. It goes high briefly and then goes low. Do you have that? Is it normal with CIDP? I’m only assuming that’s what it is. I’ve never had high blood pressure before unless I was in severe pain or really sick.

I hope you get the answers you are seeking. Take care.


#4

I just went to my neuro the other day for shortness of breath. He said the nerves in the diaphragm can be affected and could cause breathing issues. He is trying a short course of prednisone. If that doesn't work then he will refer to me a lung doctor.


#5

I do have shortness of breath, but I also have COPD. and the newest chest CT shows mild emphysema. So not sure how much is affected by CIDP. I just got back last week from Kansas Center of Excellence, and the Dr. has confirmed that I have demylinating neuropathy. Still waiting for the labs to come back, (they made taking 10 tubes of blood so easy), of course it helps that I don't feel needle sticks.

I too deal with the blood pressure issues, and can not regulate my body temperature.


#6

Well my lungs are at 60% I think this is due to chemical burn and inhalation of particles. , I also have fluctuating blood pressure. Just recently temp regulation has been off. I am on my 10th dose of IVIG . I also fluctuating blurt eyes.


#7

LOL! Ponce DeLeon and the fountain of youth!

My father in law, at 90 years, had a spinal stoke last week. In hours he lost everything, all sensory & motor functions below his navel. So my wife went to Sarasota and placed him in a deluxe clinic/convalescent home. I had to stay on Maui to get my IvIg. But that place, THE SPRING it is called, seems like the place we all need to be to escape our cares and worries and this mysterious and horrible disease, CIDP.

mamabear said:

Why do you think Florida is the answer and where in Florida.


#8

I'm interested in this... keep me informed, please.

Daisy said:

I just went to my neuro the other day for shortness of breath. He said the nerves in the diaphragm can be affected and could cause breathing issues. He is trying a short course of prednisone. If that doesn't work then he will refer to me a lung doctor.


#9

My neuro wants me to see Dr. Lung, thinking that perhaps I have a collapsed left lung. But I breathe fine with the IvIG treatment. However, some times I have strange symptoms(like SOB) for hours or days, that then leave me... and these strange symptoms are in the remission period of IvIG treatment.


Tinapet said:

I get shortness of breath too. How can you tell it's your left lung? I'm guessing mine is both lungs. I'm also getting this weird blood pressure thing. It goes high briefly and then goes low. Do you have that? Is it normal with CIDP? I'm only assuming that's what it is. I've never had high blood pressure before unless I was in severe pain or really sick.

I hope you get the answers you are seeking. Take care.

#10

I have shortness of breath from time to time usually accompanied with increased heart rate. I have read on line, and I am sorry but I will have to search out where. You know we have all read so much but that it is part of the CIDP neuropothy in the nerves in the chest and trunk. Just another fun mystery to discover about our ever changing symptoms. I went through a little over a year of IVIG and stopped because it wasnt making any difference. Cant really nail a reason for why and when the shortness of breath comes.


#11

Sounds expensive and not all of us can afford it. I live in the Jacksonville FL area and when I go to the North GA mountains I do not have the pain I have in FL and generally feel much better. Due to other medical issues I must remain living in FL.



estaban said:

LOL! Ponce DeLeon and the fountain of youth!

My father in law, at 90 years, had a spinal stoke last week. In hours he lost everything, all sensory & motor functions below his navel. So my wife went to Sarasota and placed him in a deluxe clinic/convalescent home. I had to stay on Maui to get my IvIg. But that place, THE SPRING it is called, seems like the place we all need to be to escape our cares and worries and this mysterious and horrible disease, CIDP.

mamabear said:

Why do you think Florida is the answer and where in Florida.


#12

I started with shortness of breath after a relapse last year. I still get it when I'm extremely tired or it's getting close to "IVIG day". Almost like hyper-ventilating. At least it's not as bad as it was. Like the others have said, the muscles of the diaphragm are involved. IVIG helped. I havent noticed the elevated heart rate though. It's scary- hang in there. It WILL get better & hopefully you get answers.


#13

Well this latest CT showed fluid in the lungs along with a spot (they don't think is cancer), I will have my pulmonary doc look at the CT at soon as possible.

I too have the blurry vision that comes and goes, but worse than that is the double vision that has been present for three going on three years now. The optic neurologist insists there is nothing wrong with my eyes, so there is nothing they can do. KU medical neurologist don't have all the labs back, so have not decided what test they want to do next.

We've thought about giving up our corner 3 acre lot to move into assisted living community, but the expense it just so out of this world.


#14

Look up phernic nerve. These are two nerves run down from the cervical spine and control the diaphragm. There are no back up nerves for the diaphragm. If nerve roots at C3-C5 are wonky the sensory/motor lower neuron nerve impulses are signal threshold dependent; activate using the either/or signal conditions.

Read this and it may provide you a reasons for heart rate increase:

http://en.wikipedia.org/wiki/Phrenic_nerve

BTW- My wife is selling my father-in-laws home (on a golf course) to pay the fees down the road. However, for the first 100 days his insurance covers a LARGE part of the fee, 80% I think. Still, the cost then is then around $200/day for him.

IvIG failed, do you have diabetes? So many variations to CIDP and other disease that a neurologist must determine/consider to make an accurate diagnoses! My reading about immune PNS/CSN diseases!— it boggles the mind of laymen like myself.

Recently I've dug into diabetic neuropathy; diabetes and CIDP together are a mind field for a neurologist to traverse. Also, I recently read that IvIG and other immune mediated treatments work on diabetic conditions. So, which disease do I really have? My blood sugar is under great control, but in my reading I've discovered that that may mean very little where diabetes and CIDP is concerned.

Plasmapheresis is on the horizon to make a definite determination.


jimbotx said:

I have shortness of breath from time to time usually accompanied with increased heart rate. I have read on line, and I am sorry but I will have to search out where. You know we have all read so much but that it is part of the CIDP neuropothy in the nerves in the chest and trunk. Just another fun mystery to discover about our ever changing symptoms. I went through a little over a year of IVIG and stopped because it wasnt making any difference. Cant really nail a reason for why and when the shortness of breath comes.


#15

Seem to be a common theme RE: "How long for IVIG to take effect" The older you are and the more delay to diagnose the longer it may take. I am very impressed at the adjuntive effects by watching Omega6 to Omega3 dietary intakes.

Great ref. to this is Dr. Simopoulos's book The Omega Plan. A little dated (Leaves out benifits of food enzymes and pre +pro biotics) but very helpful-buy it used on amazon or ebay. You can calculate your ratios at http://therighttrak.com/Fats.aspx Perfect ratio is 4 to 1 Amercan typical diet = 30 to 1.

I wish you luck -keep up the swimming & ask your doc about NAC [N-ACETYL CYSTEINE]


#16

I also have issues with my left lung. Shortness of breath, pain, increased heart rate. My left side is worse. I also have foot drop on left leg. IVIG has helped greatly beside oral medrol


#17

I have problems with shortness of breath also. My neuro tried prednisone, but it didn't work. He says Celcept can cause SOB. He did an echo scan to make sure it wasn't a heart issue. Next is another EMG since my legs are getting weak again. He is looking at changing the Celcept to a different medicine to see if that helps and changing my IVIG from 3 weeks to 2 weeks. If any of you are having SOB and taking Celcept you may want to ask your doctor it.


#18

"CELLCPT" with 2 "L" sjust so your searches yeild results has comments at this site:

http://www.ehealthme.com/quick_search/cellcept

Hope this helps..


#19

I have SOB, too, and sometimes it is to the point of having to pause mid sentence to catch my breath, but thought maybe it was side effect of a surgery that I had done (thoracic outlet decompression) where they actually went in and SCRAPED the scar tissue off of my nerves, arteries, bones, and muscles which paralyzed the phrenic nerve for a good while.

I swear that my vagal nerve is damaged from the CIDP b/c I get nasty gastroparesis a few days prior to my next IVIG infusion, I faint, get hiccup attacks, my heart races, my abdomen swells to the point of looking 6 months pregnant, etc, etc. I'll get the IVIG and a few days later everything starts working properly again.

I don't think a pulmonologist is going to be able to help you unless you have something going on that has nothing to do with the phrenic nerve. You'll go to your pulmonologist and he'll be like, "you got what? what is that?" smh...


#20

Fortunately for me my pulmonologist and original neuro conferred between each other, so I had no worries that he did not understand.:)

They were actually well acquainted with each other, and I had no problem with them communicating to each other.