Respiratory problems?

SandraD · 08-30-2009, 04:21 PM

Hi, again,

I would like to know how people first noticed they had respiratory issues with ALS. How did they first present?

I have had a 6-7 month (not sure exactly when things started) problem with weakness, muscle twitching, the beginnings of atrophy in the hands, wrists, and forearms, and fatigue. I had an EMG in June of both legs and one arm (the stronger of the two) and it was negative. I am supposed to go back to the neuro in six months from last visit (which would be Jan.) or if things dramatically worsen before then. I am attempting to get into a large Boston hospital for a second opinion in mid-Sept.

anyway, since I last saw the neuro who said he could not rule out a neuro condition, but said "at this time I do not think it is ALS," I have had some worsening of symptoms, though not dramatic enough (I think) for me to go back in. I have had a worsening of twitching around my lips and on my chin and a sensation of something in my throat-- not always, but causing me to frequently clear my throat. I have also had liquids "go down the wrong way," not a lot, but here and there. Most recently happened two nights ago when I was eating a thin soup with broth. I have no trouble speaking, no slurred speech or anything. the only other thing I have noticed is an occasional cracking or straining of my voice. My right shoulder also seems to be getting weaker. when I was at a clothing store today, for instance, it was a workout trying to lift my right arm above my head and flip the blouses on the rack. I also have had a recurring sensation of crawling in the pads below my fingers on both hands, I cannot see this movement, not sure if it is fasciculation. sometimes it causes my ring finger on the left hand to move on its own. both pad areas below the fingers have shrunk quite a bit and the area is quite bony.

anyway, the thing that has me worried the most is this: lately I feel like I am not getting enough air. I am not sure how to gauge respiratory insufficiency, but this is mostly happening when I am out and about with my two year old and maybe overdoing it. I have been waking up a lot at night, but I am not waking in the morning with headaches. I also notice it sometimes when I am talking a lot. Today I was chasing after my daughter at a playground and then a hot dog stand and then a consignment store when all of a sudden I felt very weak and somewhat faint and almost a feeling of being disoriented. Not disoriented in the sense that I did not know where I was, but a weird feeling. I rushed home with my daughter and after resting, felt better.

anyway, just want some input on how respiratory problems manifest. also, does anyone know if an EMG would have detected mysathenia gravis? someone mentioned that as a possibility for my symptoms, but do I need to get some other test for that?

thanks for any advice you can provide,

Sandra

joelc · 08-30-2009, 05:07 PM

If you have respiratory problems you don't have to ask, you are going to know you have problems.

And perceived weakness is not weakness, once again you will know if you are weak.

If you have to ask these questions then I would stop worrying. If you really had some problems you would not have to ask questions.

BethU · 08-30-2009, 05:28 PM

Sandra ... there are blood tests for myasthenia gravis, and an EMG could also pick up signs of MG, although they would not be conclusive. MG is an autoimmune condition, so there are antibodies in the blood that they look for. (But not all MG is dx with blood tests ... roughly 10% are dx solely on clinical exams.)

I have had respiratory problems from before the first noticeable ALS symptoms, but don't know if they are related to my heart disease or ALS. In any case, when it happens, I feel as if I cannot take a deep breath and cannot get enough air in my lungs. Sometimes, I feel as if my lungs are "frozen" ... I cannot move them at all. This is happening a lot recently when I choke or aspirate.

Shortness of breath and fast "shallow breathing" (hyperventilating) are also a common response to stress or anxiety. Hyperventilating can make you light-headed, such as you experienced. It is a result of upsetting the balance between oxygen and CO2. When you hyperventilate, you are taking fast, very shallow breaths. People sometimes have to breathe into a paper bag to get more CO2 back in the body.

Shortness of breath can be a serious problem or a minor one, but since it can be caused by heart disease, it is something to mention to your doctor for sure.

SandraD · 08-30-2009, 05:55 PM

Hi Beth,

thanks for that info, I am going to get a second opinion because I do have some REAL weakness and atrophy and not perceived weakness, as Joel suggested. I do not want to belabor the point, but I cannot lift my right arm for very long and I have trouble holding a pen and writing (I am a freelance writer) for the duration of an interview and I am having trouble lifting pots and pans and my daughter, who weighs just under 26 pounds. Previously I was a fit, active person who did yoga multiple times a week, hiked, rode my bike, etc. and I am still able to do a lot of things, but I do not have the same strength or stamina. I used to play a lot of tennis, for instance, but there is no way I could hold a tennis racquet now. I will ask the neurologist at Mass General if they can do that blood test for MG; it was not done by the previous neuro.

Truth be told, this mysterious condition has caused an enormous amount of stress and anxiety and it's entirely possible that the breathing awareness is related to that. Lately I just have been feeling like I cannot get enough air and I have to take deeper breaths when reading my daughter a story, for instance.

anyway, I do hope the forum members in general feel that it is still OK for the undiagnosed to continue to ask questions. It seems to me that many people went without a diagnosis for a long time (whether it turned out to be ALS or something else) and asked a lot of questions here and I hope that it is still OK to do. I come from the mindset that there are no "stupid" questions, but apparently not everyone agrees.

If a neurologist at Massachusetts General Hospital tells me he or she thinks all is OK, I will go away, I promise!

Sandra

BethU · 08-30-2009, 08:56 PM

Sandra, I forbid you to go away!! Until and unless you want to and are sick of us all.

Yes, it is OK to keep asking questions. In fact, that's the whole point of this section.

There are two blood tests that need to be done for MG ... the rarer one is the MuSK test. Make sure they do both. I had a heck of a time getting that one done (my 3rd dx was for MG). Your symptoms need to be taken seriously, and I'm glad you are going for a second opinion.

Take care, and keep us posted.

SandraD · 08-30-2009, 11:06 PM

Thank you, Beth, for your kind words. I know I am not funny like that fellow Zaphoon, but I would like to stick around for a while!

Sandra

Al · 08-30-2009, 11:59 PM

Feel free to stick around and ask questions. I'd be pushing for the second opinion at a specialized clinic.

AL

Naeco · 08-31-2009, 01:57 AM

Hey Sandra, sorry to hear that your dealing with this. I've had very similar problems that have gotten worse in the last few months and I know how hard it can be to keep up with a 2yr old while the symptoms are getting worse. I've found that it's been such a blessing to have a young child while I'm going through this because he doesn't look at me any differently and he doesn't let me give in to the fatigue and weakness but it's also really difficult when they don't understand why you're having trouble doing certain things they had come to expect. I hope you're able to find some answers at your next appt. Keep your chin up!

-John

awieleba · 08-31-2009, 09:43 AM

Sandra,

I too, know how you feel. I concur with John that having young kids can be a real blessing. My 3 young kids keep me going, but they are also the reason that I am soooo exhausted!!! IT is getting harder for me to keep up and I feel sad that I am not the fit and active mom that I was 2 yrs ago. But they help keep your mind busy and happy!!

I had that breathing thing last summer, and noted it while reading to my boys as well. I started to just take deeper more thoughtful breaths and that helped. I dont have it as much these days, so it may not stay for you. I dont know if it got better or I have learned to take better breaths and more of them while talking and reading. You could go to a pulmonary doc and get it checked out.

I have the same feelings as you, it is hard when you use to be so active and then cant. I have lost my strength and stamina as well. I have that feeling that you desribe, feel weak and disoriented, but I never thought it was respiratory. I thought maybe blood sugar or muscle or I dont know.

Take care and I wish you well,

april

SandraD · 08-31-2009, 10:38 AM

Hi Al,

I am supposed to see Dr. Merit Cudcowicz, the director of the ALS clinic at Massachusetts General Hospital in Boston. they are trying to get me in sometime in mid-Sept.

Thanks, also, April and John. It is hard to keep up with a toddler with everything going on, but you are right, it does keep one busy and occupied. April, did you see a pulmonary specialist for your breathing issue? I thought at first it was related to the high humidity, but that is gone now and the slight breathlessness is still there. it sort of comes and goes. It may be totally unrelated to the other stuff, as I have had a "morning cough" for a long time. People have suggested to me that I should get that checked out, but before this, I was the type to never go to the doctor. Just too busy. John, I read about your trip to the ER and that sounds very scary. I hope that you, too, get some answers soon.

April, even though I am sad to hear you still have problems and no answers, I am happy for you that it is not ALS. It is so strange to me that people can have these problems and no one can figure it out.

anyway, thanks again to all.

Sandra

katmomma · 09-17-2009, 09:34 PM

Sandra,
How are your respitory problems? The last 2 days I have noticed similar problems. I can get a big full breath, but often it just feels like I'm not gettibg enogh air. I also don't know that I'm experiencing is because I'm aware that they are symptoms. Or it could be pregnancy related- I'm 6 months along and starting to feel big and I remember my last pregnancy feeling short of breath toweards the end because there's not that much room I there. I feel like I need to go back to the doctor again.

SandraD · 09-17-2009, 10:36 PM

Hi Katmomma,

well, the breathing thing is something that I have experienced off and on, much like the excessive saliva in my mouth. it seems to come and go at this point and I am not sure what to make of that. I don't think that waxing and waning quality is consistent with ALS, but I am not sure. Right now my breathing seems fine. But the saliva issue, which seemed to dissipate for a while, is back again. And the twitching around my lips and chin, which I have had daily for at least a month, has suddenly stopped. it is all very weird. I had another extreme coughing episode yesterday, again, while eating soup. (well, it was beef stew this time.) the liquid went down the wrong way, I guess. To be honest, I have not gone back to, or called, the doctor for either of these things. I figured I would just wait for my second opinion with the neurologist at Mass General Hospital.

I did go back to the primary care doctor for my shoulder and arm, which is stiff and painful when I move it in certain directions. I was hoping to get a referral to a physical therapist to see if that might help, but apparently I need a diagnosis to get PT. she wants me to do some more blood work and an X-ray, which I plan to do sometime this week. she also wants me to see a rheumatologist (I think to look at autoimmune diseases), but I can't get an appt. til Dec. I have a two and a half year old at home and I work part-time from home-- I do not have time for all these tests and doctor's appointments!

I remember having shortness of breath in the third trimester of pregnancy. It is pretty common and caused by the diaphragm being pushed up out of its normal place by the expanding uterus. I wouldn't worry too much about that, unless you experience severe shortness of breath. Propping yourself up on some pillows, especially at night, can help.

anyway, that's a long-winded answer to a short question. Hopefully all this stuff is just pregnancy-related weirdness and nothing serious.

Take care,

Sandra