breathing trouble SO SOON? help.

[NeedCourage]

Dear Fellow CALS and PALS

This is going to be difficult to write - to sort through my thoughts and fears. And too wordy. My PAL had a neurological F/U (my shorthand for .... no, not that .... follow-up) appt a few days ago. He was not due until August but something new developed and I wanted to see MD sooner.

So far, other than EMG/NCV readings indicating MND and an ALS Clinic Director saying the mind-blowing words, "Have you heard of Lou Gehrig's Disease?" earlier this year, my husband only had these symptoms: 30-pound weight loss and very slight limp when tired. Oh, also fasciculations (sp?).None of these have worsened and nothing else (other than fatigue and diminished appetite) has developed since we began our journey... until...

I started to notice things (since I watch him like a mother hen - and sometimes like a hawk) that his cough was getting 'soft' and his formerly blasting sneezes were squeaks - also his earth-shaking snoring had stopped altogether. I finally (was only a couple days but seemed like forever) gathered the gumption to ask if his breathing felt different in any way. I should have been prepared, but, of course, was not.

He said, "Well, yes - it feels like there is a band around my chest and I can't get a full breath..." I inwardly went into immediate panic mode.
I do what I always do - immediately read up on ALS breathing problems and started doing some light exercises with him - deep diaphragm breathing; coughing; blowing through puckered lips. Stuff like that.

Our neuro examined him and kind of dismissed it - perhaps because it is premature? or not as bad as it seems to me. Said he wanted another F/u appt in 3 or 4 months. I asked if we should look into an ALS Clinic and he said no. My husband only has LMN symptoms so far - as I understand it.

ALL THIS leads up to my simple question:
Have any of you had some difficulty breathing very early on in your experience.

It always seems to be listed as part of the final stage of ALS. My honey has said he had no intention of utilizing breathing nor feed tubes.

I was just beginning to get used to the idea of his having this horrible monster. Now I am emotionally back to square one. Can't eat - nightmares... you know.
I have so many questions will save them for another time. This is the most important one to me right now.

If you can offer any feedback, I would be so very grateful. I have no one to talk to so I rely on your help. Thank you in advance - and wishes for courage and peace to all.

Hugzzz
Nancy

 

[Nikki J]

Umm did the exam include any breathing test? Not the sensor on the finger but blowing into a sensor? Or the sniff test? ( if you don't know what I mean you did not have it). If so did they do the tests sitting and lying down? Did he have breathing tests when diagnosed?

And honestly if this is a regular neuro and they are telling you not to go to ALS clinic I would be looking for a new neuro at an ALS clinic

I am sorry you are going through this worry. ALS has its own rules and some people get earlier respiratory involvement than others. Hope it is not so but if it was not properly assessed you need to get it looked into

 

[zoohouse]

This sounds a lot like my husband's atypical ALS. He saw 5 neurologist and all diagnosed ALS, even though they had a hard time showing any UMN involvement. He did not have hyper-reflexia either but lost reflexes. He was told he had the good ALS that would progress slowly, and breathing problems would happen in the later stage. 1 ½ years later notched the weak cough and sneeze. Pulmonary function test showed he had decreased from 95% PFT to 75%, but still no problem. That was July & in October he was using accessory muscles to breath, so back for another pulmonary test, and now 39%. Although he could still speak perfectly, and swallow fine, his diaphragm enervation was going away. We got a trilogy 100 with a sip & puff hose that he would take a breath from when he needed it. He will not be getting a tracheostomy so as long as he can make a seal on his mouth piece the ventilator will assist his breathing. My husband was diagnosed july/12 and is now a full quadriplegic, but is in a power wheelchair that I control, with his ventilator strapped to the back. We still do a lot, as a matter of fact went up to a mountain lake 3 days ago where he watched his son fish.

At this moment he is reading the instructions out for the new quad copter, and helping his son put it together. They will go out later and use it once it is charged. I keep hearing from my husband, "very cool, very cool".

So the first thing you need to do is get a pulmonary function test done, and that probably mean you need to get a different neurologist that will refer you to an ALS clinic, where they will do a pulmonary function test.

Is your husband a veteran? If so there is a lot of assistance available and all equipment is supplied at no cost to you. We have only met one other PALS that presented like my husband and he was a pulmonologist (sp) who developed ALS, he was the one that showed us that with a sip & puff ventilator life cold go on. We would be very happy to talk with you, or share our experience with you.

Paulette

 

[Dusty7]

"Have any of you had some difficulty breathing very early on in your experience. "

I did have some in the first weeks after diagnosis, generally waking up in the night short of breath. I knew it couldn't really be the disease. It had to be anxiety. I tried taking 5mg Valium at bedtime and my problem went away.

No matter how well he seems to be handling it or is handling it, the diagnosis introduces a lot of stress and that seems the most likely culprit. (And it's easily resolved.)

Of course, he should have the full set of Pulmonary Function Tests, to see if there is a problem or at least to establish a baseline.

Good luck!

 

[Nikki J]

We have not talked much about breath stacking recently. Well worth doing in my opinion
https://www.alsforums.com/forum/gen...athing-exercises-stacking-hyperinflation.html

 

[patrick123]

I was diagnosed in Sept. Of 2012. I had my first FVC breathing test in Dec. at that time my FVC was at 90%. By march it went down to 69%. Had my diaphragm pacer put in sept. So foe me I think breathing issues started quickly.

 

[Barbie]

Hi Nancy-- Since you are early in the disease you definitely will benefit from an ALS clinic. IF YOUR NEURO Doesn't want to give you one- just call an ALS clinic near you and tell them you are diagnosed. you should be able to get an appt. we didn't have a referral and only had to wait less than a month. you can find a list of ALS clinics on your state ALSA website, or call them. You should be seen by the whole group on your first visit and a breathing test is always included. at least they can get a baseline for future reference. Breathing troubles don't always start just at the end--they can slowly get worse over the course of the disease. and there is no rhythm or reason in ALS from patient to patient so what you read is a general pattern but could be different for your pals. your clinic may suggest a bi Pap which is not invasive (like a vent) and can make our pals much more comfortable..

 

[nebrhahe53]

I was diagnosed 1.5 weeks ago and the social worker at the clinic said she could see I was already having trouble breathing. One thing I have learned from this site-there are no rules with this disease other than it will get you eventually. Some go slow others fast. Get to an ALS clinic as fast as you can. If your neuro said you didn't need one run as fast as you can from him.

 

[gooseberry]

My husband presented inMarch to his doctor with breathing difficulties and was treated for allergies. He went back a few days later, had a chest xray and was told he had pneumonia. He finished his antibiotics and steroids and didnt feel any better. He was still short of breath.....at rest and with any movement. When he went back to the primary care he was referred to a cardiologist and pulmonologist . After a full workup by both, they both independently said he had a neuromuscular disease causing the breathing problems. The pulmonologist continued to see him and did a full pulmonary function testing set, sniff test, ct scan. Fvc was 44% when he presented and he had a paralyzed left diaphragm. This we knew when we saw the neurologist for the first time. He only has Lmn symptons but it has involved his phrenic nerves very quickly. His FVC is now 30%.

 

[affected]

Welcome Nancy and I'm so sorry you are in this situation and your fears are so understandable!

I can only agree, get to an ALS clinic where this disease is understood. Then you can get the breathing issues addressed.

Big Mark makes such a good point about the addition of the stress of coming to terms with the diagnosis and how it could be impacting on his breathing, in which case it needs addressing. But if it is the ALS it also needs addressing fast so that you can both make informed decisions.

Don't feel you have to stick with this doc just because he is a neuro and diagnosed. You have every right to shop around and work with health professionals you trust and have confidence in. You both have many tough decisions to make, so you need all the informed support you can get.

We can help with that, but you must have health professionals doing the hands on and offering information so we can help you work through that.

Keep talking, we are here

 

[NeedCourage]

Nikki - no actual tests with equipment today or before.

PAULETTE: No, he is not a Vet... and I've wondered if you have to have an 'official' diagnosis of ALS rather than Motor Neuron Disease to go to an ALS Clinic?

Dusty7 - I have never encountered a person as relaxed and comfortable in the world as my husband. I have actually never
seen him lose his temper or even get very flustered in over 20 years. (I lovingly call him "The Pod" because he does not seem of this
world - at least my very emotional world! : )

PATRICK123 - thanks for the link.

Barbie - gosh that's startling. Is a diaphragm-pacer a device which is surgically implanted? I'm still new to most terms - like the puff thingie....lol.

Thank you, nebrhahe53, for your info and suggestions.

Gooseberry - Goodness, 1.5 weeks and already so knowledgeable. Appreciate your post!

AFFECTED - thanks for sharing and I'm sorry for your husband's problems. You gave me some ideas to consider 'outside the box'.

TILLIE - I agree with your thoughts and greatly appreciate your input.


MANY MANY THANKS TO ALL... I AM SO HAPPY YOU WERE WILLING TO SHARE YOUR STORIES. (Nancy)

 

[Nikki J]

Nancy you need a new neurologist and the ALS clinic is the way to go. I am horrified that without testing at all you were told his breathing is ok. Do you have one in mind? You can search on the ALSA site or the NEALS ALS consortium site. Especially early in the disease it is well worth it. I can't find a link but I believe it is documented that PALS do better if they go to a clinic. If you need help finding one let us know but plan to call Monday morning!

 

[gooseberry]

Nancy, At our ALS clinic, they also treat MND. There are different doctors though that treat each diagnosis. We are going in August. I agree with the others that if you arent happy with your neuro you should seek out a new one that you are comfortable with....this is a difficult journey to go on especially if you are struggling with the doctors and dont have their support. When our neuro diagnosed my husband, she set up a second opinion visit for him with another neuro . She said another set of eyes may see something or he may think of something I have not. (He didnt because she was very thorough) . We have been blessed that the doctors we have been sent to have taken whatever time has been needed at each appointment and not made us come back repeatedly. For us, the great relationship we have with my husband's neuro has made it easier to get other appointments with other specialists and we dont dread going for office visits.

Sorry, this is my long winded way of saying the neuro you see and your relationship with them is so important.

 

[adozi]

ALS Clinics by Country - World Federation of Neurology Research Group on Motor Neuron Diseases/Amyotrophic Lateral Sclerosis

There are several different clinics in PA. ALS association will only give you their clinics, which really irritates me,and the MDA website isn't up to date. The people here are right, you should definitely contact an ALS clinic. You will get better, more convenient care and better outcomes for your pALS. It is ridiculous that your neuro said you shouldn't go. All pALS should go to ALS clinics if at all possible.

 

[adozi]

Also, have him sleep on a wedge pillow, so his torso isn't flat on the bed. Sleeping with a bunch of pillows can leave your pALS more comfortable, but not as comfortable as a wedge with a single pillow on top, or an adjustable bed.