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Yankeesgrl

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CALS
Diagnosis
1/2009
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US
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My husband was recently diagnosed with ALS. It began with breathing trouble back in May of 08. He was treated repeatedly for respiratory infections. He was sent into respiratory failure by a docotor who sedated him in December. At the time time he had no twitching of his mucles and we thought his fatigue was from being sick and not being active. His muscles did decrease in size. He was trached and was on and off the vent. During his stay in the hospital they were back and forth between MG and ALS. They treated him with mestinon and petnizone. Finally they tried an IVIG treatment. His lung function and overall fealing did improve alot. He had 2 EMG's and they finally conclued that he had ALS. He still talks well and still eating whatever he wants. He is limited in his activites because of his breathing. I can't seem to shake the fealing that ALS is not the right answer. Does anyone have any ideas?
 

rose

Extremely helpful member
Joined
Mar 29, 2008
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DX MND
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Maryland
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Hi Yankee's girl, With the improvement your husband had after the IVG, I wonder if maybe CIDP should be explored in more detail. Laurel, a forum member, has a husband originally diagnosed with ALS, but is now thought to have CIDP. I don't think he has seen miracles with the treatment, but they are still continuing under the premise that this is what has caused his symptoms. I will send her a private message asking her to look for your post, as your membership here will not allow you to private message until you've been around longer.

There is someone else, Marjorie R. Wilcox, who's husband does have ALS, and it started in his respiratory, I will send her a note as well.

best of luck to you, and welcome to the forum. I hope you're able to find the support you need, regardless of whether his diagnosis of ALS continues to stand.
 

ron of troy

New member
Joined
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PALS
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04/2008
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US
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Michigan
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Troy
Hi Yankeesgrl

I'm not an expert but am skeptical of the ALS diagnosis with an apparent absent of limb or bulbar involvement. Has your husband had an MRI and EMG? Have you gotten a second opinion from a neurologist at another hospital?

There is an alsa.org support group in your area that may be helpful in information and support. Catfish Hunter was a major league baseball player who got ALS.

http://www.catfishchapter.org/ourchapter/supportgroups.html
 

Yankeesgrl

Member
Joined
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Messages
27
Reason
CALS
Diagnosis
1/2009
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US
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City
Asheville
Thank you so much. I know it sound like wishful thinking but it just seem right. Thanks for all your help.
 

Al

Moderator emeritus
Joined
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7,960
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PALS
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CA
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On
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NW of Toronto
They treat multi focal motor neuropathy with IVIG treatments and if there is improvement in symptoms that is a good sign. I'd be asking why they stopped if he was improving. MMN is a much better disease to have than ALS. Get answers.

AL.
 

Yankeesgrl

Member
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Messages
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Reason
CALS
Diagnosis
1/2009
Country
US
State
NC
City
Asheville
He had 1 EMG at the local hospital which showed signs of ALS and Myasthenia Gravis. This is when they decided to do the IVIG. He had documented respiratory improvement. I recieved his medical records the other day and the neurologist said there was no improvement with the IVIG. Which I don't understand. He was the moved to Duke University Medical Hospital. They did 1 EMG and within 10 minutes they came back and told us it was definately ALS. We never saw some one from the ALS center or one of the ALS neurologist.

His speach is labored only because of the trach. As far as eating he eats whatever he wants, even steaks.
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
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660
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10/2007
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New York
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By Rose's request, I will chat a little here about Rick's respiratory beginnings to his ALS diagnosed.
I hope I cover some things that will help.

It is difficult to think back far enough to what came first, second, etc. But Rick and I think that his sleep apnea (severe) came first. 12 years ago Rick's brother had a celebrated occasion to sleep in the same guestroom with Rick, and couldn't stand to sleep in the same room because Rick wasn't breathing right. Who knows how long he was doing it, since he was a bachelor of 59 and slept alone. He didn't go for a sleep study, no matter how much his brother pressed the need..... until he started seeing me, we got engaged, and he listened to my pleads.

So he has had a cpap for over a year, and then the bipap for over six months. While going for a pulmonary visit, we mentioned some of his other symptoms, and that initiated the further testings for what was suspected as some kind of motor neuron disease.

Rick has had trouble walking for years. He used to play tournament tennis, basketball, but couldn't keep his balance to even play a slow game anymore without stumbling and perspiring profusely. Some days you would think he had been drinking, he was staggering so much.

Then, a year ago May I noticed that the calves of his legs were diminishing, especially the right one. He used to have tremendous calves, and the one looked skinny. The pulmonary specialist sent him right around the corner to the neurologist that very day that we pointed out his symptoms. (This was at the VA hospital clinic for sleep apnea.)

That day a blood test was taken and an EMG scheduled, and many reflex tests and questions asked. We were told he definitely had something going on. It took until into the fall of that year 2007 to get the diagnosed of ALS.

We were asked what road we wanted to take. We both agreed that we would want help as time went by, but that if he was comfortable and managing well, we would forego the medical trials.

Rick has morning congestion and occasionally (maybe once or twice a year) gets a bacterial infection in his lungs. We watch for the phlegm to change from clear to colored and then we go get an antibiotic. So far it
hasn't been pneumonia of any kind. Every day it takes many Kleenexes, sneezing, and coughing to clear his chest so he can eat breakfast.

Rick is on a special diet which we know helps with all his physical health. It is controlling his diabetes, healing an injury to his leg and subsequent surgeries, is eliminating the need for blood pressure meds etc.

Rick is walking and driving and working part-time. He cannot back up the car... he has to walk slowly and with determination... he has to take frequent breaks and rest.

His hands are beginning to be stiff ... showing to become mishapened... and he may soon need to wear the bipap during the day. In fact tonight he is wearing apparatus for an oxygen test that he must wear overnight along with the bipap. I have reported that sometimes he skips up to 10 breaths at a time.

Rick is the sweetest, mild mannered man you could ever meet. He never complains or worries. At least he doesn't show it. He is prepared to take on whatever comes.... and I believe he will, with courage and grace. I am a mess!

Please ask a question back if you have one. I'll look here for one... and will answer here.
 

Yankeesgrl

Member
Joined
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Messages
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Reason
CALS
Diagnosis
1/2009
Country
US
State
NC
City
Asheville
Thanks for your response. It is very helpful. My husband had just turned 36 was an active police officer. His breathing problems started in May with his main compliant being difficulty breathing. Six months of the same. He had no wobbling or falling. He was just tired and dismissed it as being sick with respiratory infections. It went from this to all out repiratory failure. He was intibated and then trached a week later. He is on the vent mainly at night and during the day for breaks to rest. His mucles have shrunk do to (in my opinion) lack of use due to the fatigue. There is not stiffness and not more on one side that the other. We have been home for a month and his condition has gotten worse in that short period of time. My biggest concern is that we are standing by thinking that it is ALS and doing nothing when it could be something that has at the least a treatment of some sort. In my gut I just don't it's ALS.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
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Yankeesgrl,

I don't know what your circumstances are, as far as ability to travel to another institution for a second opinion, but I think your husband really needs to get some more input. I agree that if nothing is being done to treat this, and it actually is a treatable condition, that valuable time is being wasted.

After that second EMG, it is puzzling that he was not sent on to see an ALS specialist at Duke. Are there any future appointments scheduled in the ALS facility at Duke? Were any medications such as Rilutek prescribed?

I do not understand why, if IVIG has had ANY sort of impact on his condition, that it was discontinued. It does not sound like this was explained to you by the neurologist you saw at Duke.

It also bothers me that he falls out of the norm not only in how his illness started, but even with his age, he is so young.

I understand that Duke has a very good reputation, but could you get to Johns Hopkins? You would need a medical referral, which should not be hard at all to obtain.

Stu Millheiser, who is a member of this forum has started the ALS Guardian Angels Foundation. He comes on this site fairly regularly, but, rather than waiting until he might stumble across what you've posted, it would be best to contact him at (949) 488 9894. His organization may have someone that can help you with arrangements and/or financial needs to travel to a university medical center for another evaluation.

I do not believe you are indulging in "wishful thinking", from what you've explained, it sounds like you should pursue another perspective from more specialists. Insist that someone explain to you how the improvement seen with the IVIG has no significance as far as the validity of the ALS diagnosis he was given.

My heart goes out to you and your family, please keep trying for answers!
 

Marjorie R. Wilcox

Senior member
Joined
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660
Diagnosis
10/2007
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New York
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Yankeesgrl... I hope you get the answers you need. There are so many things this could be. It sounds like he still has an infection rather than ALS. He is customarily too young for ALS unless he has been exposed to chemicals or asbestos or something. I'm not a medic, so only guessing all the time.
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
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07/2007
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BC
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Vancouver
Hi Yankeesgrl,
I think Al makes a good comment and query with the Multifocal Motorneuropathy being something that needs to be investigated. My husband who has CIDP MADSAM variant had a differential diagnosis of ALS in the beginning. He seemingly has a very rare variant of CIDP MADSAM that is very multifocal--which I guess confused them in the beginning and still confuses them it seems. My husband has responded quite well to the IVIG and has now been on it monthly for 18 months. After his first treatment he felt much better withing hours and had re-gained some hand strength and his foot drop improved. His nerve conduction tests following that first treatment did not show improvement, but subjectively he had improved. They went with his comments that he had improved versus relying on the nerve conduction tests. And he could grip the doctor's hand and hold his coffee cup after the first IVIG. The neurologist felt that was reason enough to carry on with the IVIG.

On other suspicion that is popping into my head concerning your husband's story is the possibility of an inflammatory myopathy such as myositis. This comes to mind because of meeting a young fellow in his late 20's in the medical daycare where my husband gets his IVIG. Since we are there for 2 days a month, we get talking to the other patients. The young man had some sort of myositis that was quite rare. He presented with respiratory symptoms such as shortness of breath and he was so tired he was having trouble getting the energy to go to work (he drove a bus). He went to his GP repeatedly with no answers. So he started researching on the internet and came up with the type of myositis that he has. He took the info. to the GP and she ran some tests. She phoned him at home and asked him to meet her at the hospital emergency room as she felt that he had the disease and might run into severe respiratory problems. He wound up trach'ed and in hospital for a week--they just caught him in the nick of time. He is now on monthly IVIG and I think he is on corticosteroids as well and is back to work. I wish you well, and keep asking questions and push for trial treatment to continue i.e. more IVIG and/or corticosteroids.
Laurel
 

Yankeesgrl

Member
Joined
Mar 3, 2009
Messages
27
Reason
CALS
Diagnosis
1/2009
Country
US
State
NC
City
Asheville
Thanks to everybody for the feedback. It seems like I have been battling myself thinking that I am just in denile and need to move on with the diagnosis of ALS, but that just doesn't feel right or sit well in my mind. It is hard to gauge because I don't know any ones else with ALS. I have been watching some of the videos posted on youtube of people with ALS and it just confirms in my mind that ALS is not the right diagnosis.
 

Yankeesgrl

Member
Joined
Mar 3, 2009
Messages
27
Reason
CALS
Diagnosis
1/2009
Country
US
State
NC
City
Asheville
I called my husbands neurologist and asked about further testing for other conditions. His reply was that there was no need for furthing testing cause they were sure he had ALS. The reason that they gave me was because he has upper and lower moto nero sysptoms. I am at a loss as to what to do. Should I try to find a neurologist that will listen to my concerns about altern. diseases or take him at his word? Any feedback is welcome.
 

crystalkk

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Learn about ALS
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pennsylvania
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I would definately get another opinion on the diagnosed. Mosts PALS get 2 or 3 opinions.
 

brooksea

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My husband had 3 opinions, not counting his GP. Don't stop. Press for second and third opinions. This is too serious not to. I wish you luck and hope it's not ALS!
 
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