Hi Denise, I have been suffering with a horrible cough, asthsma, wheeze, and severe pneumonia since April of this year. My CT is clear & I don't smoke. I was DX with MS in 2008 after 12 years of symptoms. The pneumonia put me in the hospital for 14 days in August. My Neuro tells me it's not MS related, but I'm having swallowing problems & I think he's wrong. A pulmonolgist put me on long taper prednisone, strong antibiotics, and a vibrating vest to loosen lung secretions. I am still on these drugs. This is only the latest course of treatments this year. I'm worried about the condition returning after I finish this current treatment. It has returned before. I am also a professional singer. This breathing disorder has made my life quite miserable. I'm also experiencing blurred vision & extreme lethargy. I am going to be treated with IgG infusions starting this month. This was precribed by a Hemotoligist because my numbers are so low. I'll let you know how or if this works out. God Bless us, Katkan
I have had the same symptomology for about four years. After my GP ruled out all of the obvious things, I was referred to a pulmonologist. It hadn't occured to me that the coughing might be related to my MS. He ran a series of tests-breathing into a machine with and without broncho dialation medicine to rule out asthma, a swallowing study, chest x-ray (that is all I can recall) He then said since all of the things like asthma, allergies, lung cancer were ruled out, I have an MS related condition called laryngal spasm-where the vocal chords have intermittent paralysis that causes several things. I also have a slight affect of my swallowing ability where saliva builds up in my throat and I don't swallow automatically. If this is happening, when I cough the fluid can get into my lungs. I also can choke on liquids (solids don't seem to be a problem, because so far the swallowing is subtle).Choking is an ongoing issue-so my pulmonologist had me get a medic alert bracelet (to alert folks that if I am choking or having trouble breathing it is my spasming vocal chords--not something lodged in my throat)
Also, this is one of the 'rarer' MS symptoms, even with the pulmonologist's diagnosis it was difficult to get my neuro and GP on board (it doesn't help that I am a fat chick-so both docs suggested my shortness of breath and coughing came from a lack of excercise). So, I talked with my MS Society chapter and did some of my own research and found articles that I gave to them. I understand that this can be treated with a botox injection, but haven't looked into it yet.
Thank you for this very informative and helpful response. I am seeing a pulmonologist as well and he has ruled out the typical possibilities, like asthma, allergies, etc. I have not heard of laryngal spasm, or of some of the other problems you identified and appreciate your bringing them to my attention. I am going to do a little more research and will bring this information to my pulmonologist when I see him again next week.
I wish you the best of luck in coping with this, and other MS symptoms. Thank you again, Denise
One more question, if you don't mind. Has your voice changed from all the spasms and coughing. I always sound very scratchy or hoarse now, and at times the end of my sentences get lost because I don't have enough breathe to project the words very far.
I don't know what is causing all this yet, but losing my voice is a real problem. I do some public speaking as part of my advocacy work and don't want to lose that ability completely.
Hope you are feeling okay.
Hello, I also have swallowing problems which cause me to cough and choke on food or saliva on a regular basis which sends me into a laryngospasm. It was very scary until I learned what it was and that it will subside in about 30 seconds to a minute. But what I have just figured out is that when I am coughing, not laryngo spasm, it doesn't feel like the part of my esophagus that would be used to clear my throat is working any more! Therefore I can cough and cough and cough with no results! I awake every morning to a five minute coughing attack. I haven't addressed this with my Dr. yet. Don't think there is much that can be done about it. Just another part of by body that has decided to "retire" prematurely. I also belive that I have cold induced asthma. Cold air, cold drinks, it all gets me going! Oh joy!
I'm no expert, but I read on another MS site that coughing and resperitory problems are relatively common. One site said that about 20% of MS sufferers have respiratory problems.
I have that problem quite a bit. I'm a fan of Fox News NY and I noticed some things with Neil Cavuto, from business news. That I had experienced, I was curious and googled him, to my surprise he has Multiple Sclerosis, I was shocked. The breathing part sometimes it's like a giant bear hug or it mimics a heart attack
I was in the hospital 2x because they thought it was my heart.
This is one strange disease.
All The best- Eva1967
Thank you for this information. These are not symptoms we often hear of related to MS. I have heard of the MS Hug and swallowing problems but this is very different and I appreciate your sending me this information. I hope you are doing well. Denise
Thank you for responding to my question. 20% is a lot of people who are experiencing coughing fits and breathing problems, I wish there was more information available about these issues. They probably aren't fully recognized as related to MS. My doctors say "maybe, it could be, don't know," but in the meantime I am having difficulty breathing, my blood oxygen level is down to 85, and no one seems to know why.
I have a huge amount of spasticity in my chest which causes extreme tightness. It's called The MS Hug. It's difficult to get a deep breath when this happens. As a result, I have a condition which small parts of my lungs have collapsed. This has caused an asthma type cough, chronic bronchitus, and shortness of breath. This has caused my doctors to put me on asthma medications. I also take fairly large doses of Baclofen and Zanaflex to help with ths horrible spasticity in my chest. I really feel for you. I've daid numerous times to my husband that I wouldn't wish this upon my worst enemy. Do speak with your Neurologist about this. There is medication that can help. Eventually, you will used to having it and know how to deal when it happens.
Good luck and God Bless you.
Hi, i was looking for personal stories on the MS hug (most importantly, the chest hug) and saw your comment. I am having some of the same horribly symptoms you listed. Have now been in the hospital 5 times in a month. I have 'officially' been dx'd with MS for a year and 1/2 and I am RRMS. I've had cardiac tests (all normal), chest xrays, MRI, etc...and, one Neuro IS THINKING that my nerves controlling my chest/resp. muscles are 'messed up' by MS causing these horrible breathing difficulties (which after my Pulmonary testing last week, caused the Pulmonologist to urgently admit me into the hospital/in-patient 6 days ago), major chest and rib burning and bad pains, smothering feeling, MAJOR chest tightness (the tightness even travels to throat/esophagus and it feels like my swallowing is hesitant or a lil more difficult at times int he last 3 days). ANYWAYYYYYY, I just finished 3 days of IV Solumedrol (but it is probably a little late for that, even tho i pushed hard for it after about a week of symptoms), and am on my 10th night of Elavil (Amitryptilene--muscle relaxer/antidep.), Albuterol inhaler (didn't help at all!)...all the symptoms wax and wean, but they do not go all the way away, but the last 3 1/2 days have been the worst!!! It all started suddenly a month ago...i had gone thru a horrible amount of daily stress/depression, then. Ugghh!!!! I'm so scared I'm gonna end up on a ventilator; although that is rare w/ MS'ers, I've read it happens. OK, MY QUESTIONS for you are: 1) Are you feeling better nowadays?? (I PRAY YOU ARE!) 2) Has the breathing/tightness/spasticity been healed?? 3) Can you tell me a little more details what you mentioned in your post about 'small parts of your lungs being collapsed?? 4) Which meds helped it, if it did go away?? God Bless you, and hope you are totally healed! :-)
THANK YOU SO MUCH FOR ANY INFO/TIPS/SUPPORT YOU CAN GIVE ME!! :)
Hi, I am having bad breathing in difficulties (Pulmonologist ran breathing tests and urgently admitted me to hospital last week), horrible pains/burning/tightness in my chest and rib/ab areas. I have been dx'd w/ MS for a year and a half and thought the vertigo episodes were horrible (which they are!!), but this is way worse. I am scared to death of what is to come! I'm praying it'll resolve and be healed soon!! Anyway, I was just wondering if your breathing problems and coughing ever went away and, if so, did you take meds/do Physical Therapy/or did it go away on its own? Thanks so much! :) Praying you are much better!! :-))
Please accept my sincere apologies for not responding to your comment before this. For some reason I received an email today telling me that I had a response, and there are a whole list of them. I am going to try to respond to everyone but it may take me a few days. I simply want to tell you that yes, this is one strange disease. Every time I think I have it figured out something else, something even stranger, happens and I am at the starting point again. I have progressed quite a bit since I first wrote this comment, although I have added to my blog on the MS page that you might want to check out. I hope you are feeling better and your symptoms are under control. Thanks for writing. I might suggest that you read all the comments to my question, they are very informative and were very helpful to me as they might be to you. Best of luck, Denise
Please accept my sincere apologies for not responding to your comment before this. For some reason I received an email today telling me that I had a response, and there are a whole list of them. I am going to try to respond to everyone but it may take me a few days.
I also have the MS HUG and sometimes I feel like ripping off my bra and any other clothes I have on, it feels like they are tight around me. I then realize I have already taken off my bra and have only a loose top on so that isn't causing the sqeeaing that I am feeling. It is coming from inside. Like so many others I have been unsuccessful in getting an answer to what causes this and what I can do to relieve it. It's just quite disturbing.
I also still deal with the persistent cough, sometimes it is so bad I cannot breath. And I have definitely had a significant change in my voice pattern and tone, which I think is from the cough. I bought the voice activated software to help me with my writing, thinking this would help me a lot. When you first get it you have to read into it for about an hour or more so the computer can recognize your voice. I did that and it worked well for about a month or more, as long as I remembered to tell the computer where to put the punctuation, go to the next line, capitalize a word, and so on. Then the computer started to send me messages that it didnt recognize my voice. I thought that was odd because I had been using it quite a lot and had no problem. Then I realized that when people called they often asked me if I had a cold, or if they woke me up. I realized that my voice was changing, people recognized it but so did my computer. Of course I couldn't sound like Lauren Bacall or some other sexy starlet, no, I just sounded like I had a cold.. Oh well, at least I can still talk. I can't imagine what I woudl do if I lost my voice on top of having the vision problems that I have as a result of MS. I have constant double and blurry vision and the doctors I see for that tell me I just have to learn to get used to it. Famous last words, right? I hope you are doing okay and your symptoms are not getting worse. Denise
To answer your questions I must say that there are days that I feel much better and days that I feel like I have little control over my body at all. I find that the MS Hug, as bad as it is, is not my worse symptom. I would have to say that the vision problems, bladder issues, balance problems, and the numbness in my arms and legs are the symptoms that I find most consistent and problematic. Even after I am finished a "flare-up or exacerbation" my body never goes back to where it was before I had MS, although it is much better. I don't know if I mentioned that I have a spine condition that required 4 major surgeries, including a fusion. I now have 2 serious curvatures of my spine which are causing me to tilt to the right, the same side I had a hip replacement after I fell in 2001. And now I need a knee replacement on that same side, but it is delayed because of a chronic post-surgical infection after the hip replacement. I use a wheelchair all the time and as long as I can get people to take me out once in a while it's not bad. I just moved from NYC to LI so I can be near my daughter and her family, she has two little boys ages 2 and 4, and I love being close to them. I like living out here, this is where I grew up and where I raised my daughter, but I miss the public transportation in NYC. I moved there when I could no longer drive in 1994, and I am working hard to maintain my indepdendence now that I am out here again.
The important thing to know is that I am very Blessed. I have a good life, with wonderful family and friends who love me. I can see well enough to do my writing and reading, and I have wonderful memories to remind me of how wonderful my life has been and how many wonderful experiences there are and love there is to look forward to in the years to come.
Thank you for writing. Again, I apologize for the delay in responding. Please let me know how you are and I promise I will write back promptly. Regards, Denise
I am sorry I have not responded sooner than this. I just got an email telling me that there was a response to my question and there is a whole list of them. I would have responded much sooner if I had heard. In fact, I think I may have written to a few people but don't remember which ones. Yes, I am as confused as I sound!
I am sorry you are dealing with the chronic cough, it is a horrible and scary feeling isn't it? Sometimes when I am coughing so hard and can't catch my breath I wonder where my next breath is going to come from. Will it come? What is going to happen to me? I now wear a "panic button" to call for help, mostly in case I fall, but it has crossed my mind that I might need it when I am in a coughing fit. I have never been on a ventilator for the coughing, but I did have oxygen for a while and I am thinking I may need to have it again. I just don't want it, as I am sure you can understand. The doctor wanted to do a biopsy but I coughed so hard under anesthesia he had to cancel it. I believe it is spasms; once you have experienced serious body spasms you don't forget the feeling of having a part of your body tighten up so badly you can't move. That is what happens to my chest, and I can't breathe in or out, my coughing is dry and I can hardly get the cough out It is terrible and I am sorry you have to deal with this too.
Basically I like to take the approach that I live a BLessed life. I have a wonderful daughter who is now married and has two adorable little boys, ages 2 and 4. They are why I moved out of the city—I love living near them and seeing them as much as I can. I had a wonderful career until 1998, when I had to stop and begin to take care of myself. I have a large, wonderful family and many great friends, and as long as they all visit or take me out once in a while I can't ask for anything more. Most importantly though, I have wonderful memories of life and love and my memories of these show me how many terrific experiences I have to look forward to. I hope you too can have these expectations and find peace and joy in your family and friends.
My mom has had MS now for over 20 years. She is almost bedridden but still in good spirits but about 1.5 weeks ago now, she had either a small stroke or a MS episode so she currently is still in a hospital bed in Illinois. They did all the tests etc. and no indication of a stroke, but the results now is she cannot swallow. We have the pathologist come in twice a day, but she still can't swallow. We are thinking now of putting a trach in to relief the pressure and make it easier to breathe. Its a very very tough situation right now, and if you have any advice, please reply, thanks.
WOW!! I was looking for more information on a news article about games for MS and your profile was listed. First, I have to admit that I rarely take the time to look at the many items listed on a web page along with the article the item I searched for...I'd never get anything done!
I have always struggled with a cough following a cold or flu, sometimes for a month or more. Last August I started coughing...as a first symptom, followed by sinus symptoms. The cough was worse than ever before and the sinus symptoms persisted. I've had trouble choking on liquids for years...since before I was diagnosed with MS in 2001.
This time though, I began to have episodes during coughing where I was unable to breathe in or out... I told first my GP, then an ENT, a pulmonologist, allergist, MS doc, hematologist/oncologist and ER doc over the next 4 months...it's like breathing through a straw and then the straw closes up while coughing. Then add fluid build up in my eyelids about 4 months into this...every test in the book left docs insisting this was not allergies and not MS related but I was diagnosed with asthma, vocal chord dysfunction, sinus infection. The inhalers did help my breathing and cough and speech therapy helped me avoid the slamming shut of the vocal cords while coughing. Antibiotics didn't help the sinuses much...and steroids helped temporarily. Finally my GP tried 30 days of steroids with a very slow taper and an 'anti-inhaled-mold' pill daily for the same 30 days. I felt about 80% relief of symptoms and now have occasional bouts of mild persistant cough and sinus...tolerable. Choking on liquids is about the same frequency as before the 8 month nightmare.
My MS specialist does not believe this is MS related. My bloodwork seems to prove it's not an allergy. The only 2 explanations I was left with are another wacky immune response or something hormonal since my period stopped abruptly at the same time all these symptoms started...and returned last month!
Your question and the responses you received put MS back on my list of possible explanations!
On an unrelated topic...I'd like to talk to you because of your expertise with non-profit organizations.
take care of you,
Hope you're doing well.
My wife suffers from MS and has the same EXACT symptoms. Our neurologist can't seem to find a cure for this either. We too have found some relief with the use of steroids in the past but didn't seem to help much during her last episode. I took notice that your last post was in 2009. Have you found any answers to relieving this cough as we are despirate for an answer as well. Please feel free to reply by contacting us through email at email@example.com or contact me through FB by searching Rod Pabst.
I was amazed to read this question and the number of responses that you received. I have had remitting/relapsing MS for the past eighteen years. About 10 years ago I started to have some issues with severe couging. All my doctors (internist, alllergist, pulmonolgist, and neorologist) thought it was allergy related. My last visit with the pulmomolofist ended with him telling me that he had tried every mecication that he could think of and was "stumped". Now I have something to take back to him. Thank you! I pray that you and all involved will find answers and relief. Pamela
I was looking up M.S. and cough because my Mom has these coughing spells nose runs coughing hard and loudly. there is no real time but she get these spells in the middle of the night or while eating where her nose runs like a sieve, spell last for a couple minutes at a time. she gets them frequestly then nothing for a couple weeks then she starts getting them again! Mom is 82 and has had M.S. since she was about 29yrs old. discovered it in her 40s. She is quadriplegic with slight movement in right hand to control her moude for computering!!!!