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kman543210

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I posted a few months ago on this site, but I have a little more information and worsened symptoms, so I just wanted to hear other people's experience with ALS/MNDs. I had several debilitating symptoms that started 3 years ago before the motor nerve involvement, but I won't go into detail for the purpose of this post. I will say that I am being treated for Lyme Disease currently since I had positive bands on my Western Blot and my CD-57 was 20 which is supposed to indicate highly active infection. Regardless of the cause, my motor nerves are involved.

A year and a half ago (January 2006) my right leg started to feel this weird sensation, almost a tingling of the muscle, while I was driving home from work. When I stepped out of my car, I didn't feel like I had very much strength to hold myself, and I started to limp. It seemed to get worse over the next week, feeling a little stronger in the morning, feeling like I could barely walk by end of day. 1st EMG was said to abnormal (not a neuro who did it). Muscle biopsy normal. 2nd EMG in May 2006 didn't show the same abnormalities, but by this time the weakness seemed to subside for a few weeks. It came back again, then seemed to get progressively worse.

I ended up moving in with my parents due to the fact that I felt like I was going to pass out while driving home, and I couldn't function very well. By September, I was walking with a cane, then my swallowing suddenly started to get bad. It came on in a very short period of time, then would seem to subside. I had another EMG in November by same neuro, said definite abnormalities but didn't think was ALS. New neuro that I'm seeing as of beginning of this year is an ALS Specialist and Medical Director of Portland ALS Clinic. She's done several EMGs and said that is has progressed in my arms but that she still doesn't think is ALS. She sees renervation and says that's not typical.

Swallowing difficulties were confirmed through modified barium swallow. Breathing difficulties seemed to come on suddenly in February. I was in the car with my dad, my chest felt this warm tingling and almost slight pressure, similar to feeling in legs. Over about 10 minutes, it felt like I couldn't get air into my lungs. Fast forward to pulmonary test. Neuro said shows reduced lung function but nothing to worry about (yeah, easy for her to say when she hasn't gone to the ER twice for not being able to breathe).

My insurance approved Mayo Clinic, so I'm going to get that set up. This last week was the worst. Starting last Monday, I felt that slight burning, pressure sensation in my chest/abdomen area. Very hard to breathe. Since then, no let up with breathing, hard to get air in all the way. Today was the worst though. I got out of breath just walking to my dad's car with a cane. I started to feel within minutes that each breathe was a struggle just to get air in. My chest and abdomen hurt and almost felt like they were burning (same happened during pulmonary test). Just sitting here, I feel like my scalp is going numb and that I could pass out. My abdomen feels like I did 100 sit-ups.

Sorry for long stories, here are my questions for those who have experienced breathing difficulties due to MND (I know everyone is different). How sudden did it come on, or did you slightly notice it over time? Is there pain involved from not being able to breathe for you? Does anyone have the tendency to hyperventilate by taking too deep of breathes? If you have breathing problems, do you tend to breathe more quickly? Is it possible to have a diaphragm onset so suddenly when my legs haven't seemed to get worse since last December (my pulmonary function test was just a few months ago)?

I am afraid to go to the ER because they just do chest x-ray and EKG and send me on my way. I try to explain to them that it's probably due to motor nerve involvement but that I just haven't gotten diagnosed. I am so afraid now that I may have respiratory failure soon before going to the Mayo and don't feel like ER is an option anymore. Sorry for the long post, but I'm pretty scared right now.
 

Al

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Hi kman. My breathing problems came on slowly, Almost 2 years when I think back about the shortness of breath starting until I needed a Bipap. No pain involved. Just a smothering sensation. From what you describe I'd be surprised if they say you have ALS. Weakness doesn't usually come and go. Diaphram doesn't usually give out quickly but that doesn't mean it can't. With MND's almost anything is possible but your symptoms are quite different from anything I've experienced. Sorry I couldn't be more helpful.
AL.
 

patricia1

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kman543210 said:
I posted a few months ago on this site, but I have a little more information and worsened symptoms, so I just wanted to hear other people's experience with ALS/MNDs. I had several debilitating symptoms that started 3 years ago before the motor nerve involvement, but I won't go into detail for the purpose of this post. I will say that I am being treated for Lyme Disease currently since I had positive bands on my Western Blot and my CD-57 was 20 which is supposed to indicate highly active infection. Regardless of the cause, my motor nerves are involved.

A year and a half ago (January 2006) my right leg started to feel this weird sensation, almost a tingling of the muscle, while I was driving home from work. When I stepped out of my car, I didn't feel like I had very much strength to hold myself, and I started to limp. It seemed to get worse over the next week, feeling a little stronger in the morning, feeling like I could barely walk by end of day. 1st EMG was said to abnormal (not a neuro who did it). Muscle biopsy normal. 2nd EMG in May 2006 didn't show the same abnormalities, but by this time the weakness seemed to subside for a few weeks. It came back again, then seemed to get progressively worse.

I ended up moving in with my parents due to the fact that I felt like I was going to pass out while driving home, and I couldn't function very well. By September, I was walking with a cane, then my swallowing suddenly started to get bad. It came on in a very short period of time, then would seem to subside. I had another EMG in November by same neuro, said definite abnormalities but didn't think was ALS. New neuro that I'm seeing as of beginning of this year is an ALS Specialist and Medical Director of Portland ALS Clinic. She's done several EMGs and said that is has progressed in my arms but that she still doesn't think is ALS. She sees renervation and says that's not typical.

Swallowing difficulties were confirmed through modified barium swallow. Breathing difficulties seemed to come on suddenly in February. I was in the car with my dad, my chest felt this warm tingling and almost slight pressure, similar to feeling in legs. Over about 10 minutes, it felt like I couldn't get air into my lungs. Fast forward to pulmonary test. Neuro said shows reduced lung function but nothing to worry about (yeah, easy for her to say when she hasn't gone to the ER twice for not being able to breathe).

My insurance approved Mayo Clinic, so I'm going to get that set up. This last week was the worst. Starting last Monday, I felt that slight burning, pressure sensation in my chest/abdomen area. Very hard to breathe. Since then, no let up with breathing, hard to get air in all the way. Today was the worst though. I got out of breath just walking to my dad's car with a cane. I started to feel within minutes that each breathe was a struggle just to get air in. My chest and abdomen hurt and almost felt like they were burning (same happened during pulmonary test). Just sitting here, I feel like my scalp is going numb and that I could pass out. My abdomen feels like I did 100 sit-ups.

Sorry for long stories, here are my questions for those who have experienced breathing difficulties due to MND (I know everyone is different). How sudden did it come on, or did you slightly notice it over time? Is there pain involved from not being able to breathe for you? Does anyone have the tendency to hyperventilate by taking too deep of breathes? If you have breathing problems, do you tend to breathe more quickly? Is it possible to have a diaphragm onset so suddenly when my legs haven't seemed to get worse since last December (my pulmonary function test was just a few months ago)?

I am afraid to go to the ER because they just do chest x-ray and EKG and send me on my way. I try to explain to them that it's probably due to motor nerve involvement but that I just haven't gotten diagnosed. I am so afraid now that I may have respiratory failure soon before going to the Mayo and don't feel like ER is an option anymore. Sorry for the long post, but I'm pretty scared right now.
When it comes to your breathing it almost sound like an anxiety attack.I dont believe the breaathing come on that fast with MND And I dont blame you with all that you are going thru. Sorry you are having a hard time Pat
 

kman543210

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That's the weird thing about this entire disease I have is that all of my symptoms came on suddenly, even if the severity took months to a year to get at their peak. I was never convinced of Lyme, but I saw a doctor who was convinced. Most other doctors don't acknowledge it, which is certainly understandable. I was told that it could take 3 months on IV Ceftriaxone to notice difference. I was only on for 2 months before I developed allergy. Breathing started a few weeks after I had to quit. I did notice that the progression of my legs seemed to stop in January after a month, but this could have been a complete coincidence.

Right now, my chest/diaphragm muscles feel so fatigued just breathing. No one believed there was ANYTHING wrong with me until the confirmed abnormal EMG last November, then they finally took me seriously. How is it possible to have motor nerve damage/involvement show up a long time after I knew something was wrong. Thanks for replying. I hope they can figure this out at the Mayo Clinic. My arms have gotten so weak too, hard to sign my name sometimes. That came on suddenly too. Felt as if my arm was going paralyzed while I was in a meeting. Shows progression on EMG. I did have twitches that started in February, but they have subsided. No cramps, neuro says weight loss but no atrophy.

Have you heard of any other MND besides ALS that can cause sudden symptoms that one can feel coming on, almost as if my nerves were being attacked by something. It's almost like what happens with MS, but she said my sensory nerves are not involved. MRIs all clean from last year.

In terms of panic attack, I promise that it is not. My heart rate does not change, and I do not breath faster at all. Matter of fact, I feel like I have to concentrate on my breathing. My nose feels numb sometimes, almost as if I can't even feel myself breathe. Just sitting here right now, it feels like I have something squeezing my insides in my chest and abdomen area. It doesn't technically come and go, just the severity gets worse, then not as bad, but every time I have it gets really bad and then subsides, it progressively gets worse (kind of like 2 steps to bad, 1 step to better, 2 steps to bad, 1 step to better...). Thanks again for your feedback. It's definitely motor neuron involvement, but I don't know what it means about renervation (or was it reinnervation).

Is it possible that it truly was the bacteria that causes Lyme to start all this and I have motor neuron and MS-like symptoms? Just thinking out loud, but I have had problems accepting Lyme because there's too much controversy.
 

Jamiet

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Kman,

I sound alot like you. I have breathing difficulties, just like a get a little dizzy or something and it's like i can't get full breaths. This has been happening since December 06.

I can still walk, but, i'm stiff. My left arm is getting weak.

I am on the same lyme boat and are not sold on it either. I started on zithromax and malarone and i progressed more in two weeks on it than i did in 6 months, so i stopped and are going to request ceftriaxone when i see the LLMD. He is also convinced i have it, specifically, the sweats and chills i get all the time. I'm curious how many ALS patients get the chills all the time.. Also, i had neck pain, left eye pain for years....throat issues, lymph nodes swollen in neck for years, to thepoint i had one removed and tested...

I know the ceftxrianone (rocpehin) treats neurological issues also, so it's a good overall drug to try for lyme. I am going to request this.

I've had unexplained medical issues for years, going back almost 10. All kinda unexplained fenomina.

I hope it gets better for you.

take care,

jamie
 

kman543210

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Thanks for sharing your story, Jamie. I didn't even go into my other symptoms before the muscle weakness started, as I respect that this is an ALS/MND forum. I hope you're not offended by this, but I have been on Lyme forums and have seen too many people think everything is Lyme Disease. I chose to start IV Ceftriaxone even though I wasn't 100% sure I had it. I had to pay out of pocket for the PICC line as well as the antibiotics, so I did not take that decision lightly. I read about it for almost a year before I got to that point and made an informed decision based on the benefits vs. the possible side-effects. To be honest, I did not even think I'd make it past last year. What caused me to definitely continue treatments again is that the CD-57 is supposed to measure active infections, and mine was 20, normal being >200. I don't know much about that test.

My symptoms all started coming home in July 2004 from a Montana/Wyoming trip where I did a lot of hiking and camping. I did have a couple bites that I remember, but I did not have a rash and they could have been spider bites. I all of a sudden started to feel as if I was going to pass out and lost my appetite that night as well. I had chills, weight loss, loss of appetite, and I had this constant feeling that I was high on something. I lived like that for a while with no help from doctors. Got worse in November 2005 when I started waking up in the morning feeling just as woozy. Following January 2006 is when the muscle weakness started in my legs, suddenly. Summer 2006 I noticed same thing happening to my arms. I couldn't drive anymore, so I had to move in with my parents permanently (not even 30 yet at the time).

I still have to walk with a cane for long distances, but my arms are weakening too so that it's makes that more difficult. My legs are still weak but seem to have stabilized. Have you had abnormal EMGs? What did they say about them? My neuro explained that renervation means that the nerves are getting bigger to make up for the ones that were damaged, but I don't know if that means if they're trying to grow back. No matter what caused this, it is definitely motor nerve involvement and not sensory nerves. Thanks again. In one aspect I'm sorry that you have to go through what you're going through, but I appreciate that at least I'm not alone.

Kevin
 
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