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cubcake

Distinguished member
Joined
Jul 18, 2011
Messages
271
Reason
Lost a loved one
Diagnosis
10/2011
Country
US
State
Ca
City
San Ramon
Hi there. I've been lurking on this site for a few weeks, and finally have the courage to write. I don't know if I'm just having a really bad day, or ......I don't know.

I truly believe my husand has Bulbar Onset ALS. His speech started to slur a little over a year ago. At this point, I think I'm the only one who can make out a few words every now and again. Now, he sleeps 14 hours a day, has twitching arms, a crazy gag reflex, chokes on food and drink and has pretty extreme emotional lability. He still works full time, because he doesn't want to be alone. I work within feet of him. Everyone at work loves him so much, I'm sure they would let me wheel him in on a hand cart, if that's what he wanted.

We've been to the Neurologist (Kaiser), who didn't find anything, so she sent us to UCSF for studies being conducted for FTD. They are observatory in nature only, so they just run tests and compare them to other patients. We are more a tool for than they are for us. They also don't acknowledge symptoms that don't seem to fit the picture they want. We have no appointments with anyone for the next 6 to 9 months.

In the mean time, I'm just watching him go down hill, and he's in total denial. He thinks, whatever he has, will get 'better.'

I'm at a loss and I don't know where to turn.
 
You should get a second opinion at another center.
 
Hi cubcake! Sorry you are here but more sorry you and your husband haven't had respectable doctors to consider your potential PALS symptoms. I couldn't agree more with aly- second opinion is a must. Good luck! Hugs
 
Bless your heart...Please try to get another dr to get that second opinion...
 
When you say "didn't find anything" -- what tests were done?

Why is he in an FTD trial? Is he displaying EL or FTD symptoms? I'm a little confused.

I'd have a second opinion, too, were it me.
 
Cubcake, that is a very cool name, welcome. Our hearts go out to you. Your paragraph is
interesting.

I truly believe my husand has Bulbar Onset ALS. His speech started to slur a little over a year ago. At this point, I think I'm the only one who can make out a few words every now and again. Now, he sleeps 14 hours a day, has twitching arms, a crazy gag reflex, chokes on food and drink and has pretty extreme emotional lability. He still works full time, because he doesn't want to be alone. I work within feet of him. Everyone at work loves him so much, I'm sure they would let me wheel him in on a hand cart, if that's what he wanted.

This paragraph tells me that you are either exaggerating or the others are dumb as a box of rocks. The medical part is hard enough, but the home life sounds really crazy. What do the others think when you all go out to eat? Have him go on a fishing trip or play golf with his friends. It is pretty easy to expose these onsets you say he has. Are you covering up for him, making special foods, helping him get up after 14 hours of sleep and getting ready?

Only asking because, I know denial, don't enable him. I am not saying don't help, just don't enable denial.

Thanks for opening up, we need each other.

Jim
 
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Hi Jim - I really appreciate your honestly. I'm sure that it is a little of both; I 'help' to a fault and our co-workers and family are huge boxes of rocks. There seems to be a very large game of Don't Ask, Don't Tell. His mother is 93 years old, and everyone is Hell bent on not 'upsetting her' with any sort of bad news. And since he is not acknowledging his plight, I'm alone with the rocks.

Also, since he began losing his ability to speak, he's been diagnosed with Celiac Desease, so all of our food is prepared and eaten at home, mostly, so there are no 'lunches with the guys.' That also gives Fred and his family an excuse for why he can't speak and hope for a brighter future. I'm all for hope, but mine requires a decent dose of reality.

I don't feel there is any real exaggeration (naturally!) because no one can understand him at all. Everytime he attempts to say anything, and those occassions are few and far at this point, everyone looks to me for translation. I bought him an iPad with SpeakIt installed and he uses that at work, on occassion. When we go to family gatherings, he cries half the time we are there and everyone writes it off as his being 'sensative.' If he chokes, they turn away until the episode corrects itself.

I would love to get a second opinion, but I don't know how that works within the Kaiser system. Every doctor just reads what the last one wrote and repeats it. I'm in Northern California. Does anyone know where I would begin to find testing and support outside of our Kaiser Insurance?

Thank you to all who wrote. I can't express how much it means to me to let this out!
 
Have your primary physician refer you to a Neurologist who will call for blood tests and perform an EMG. Good luck!
 
Hello, Not Me - He is in the FTD trial because when his Kaiser Neuro witnessed his aphasia over a few months, she decided that he would be a perfect, young, otherwise healthy candidate for the studies at UCSF. She seems very starstruck by the big names heading the studies and defers all questions and treatment to them. Again, these studies are observatory only. That being said, the tests we've received have been numerous and include a few lumbar punctures, an EMG (came out clean in April, but both the doctor and I could see the fasciculations in his arms in June) an EEG (he gets these strange facial seizure-looking episodes that they wanted to rule out as actual seizures) and a host of blood and urine tests to rule out anything "treatable."

I don't know what EL is, in reference to your question, but the FTD symptoms that he does exhibit seem to overlap with ALS.

Thanks for your reply and support.

Really, to everyone.
 
Hi Cubcake. I had a similar problem with dr.s deciding to read one another's notes and just say the same thing over and over without looking further into things. I got a second opinion outside of the group. Now granted I don't have Kaiser..but a similar group with similar standards...and it took FOREVER to get it approved. The dr. had to request a referral to the outside group/hosptial and I called the health insurance group once a week(min.) for two months before they finally got tired of me and approved it. You are allowed a second opinion outside of the group...I believe everyone is...so look into it. Ask the last dr. to send a referral to a bigger place (an ALS clinc would be good) . If they refuse, say you will sue or you will show up everyday/everyweek with the same problems that are progressing and take up their time till they realize you are not leaving. Persistence is the best medicine when dealing with this...but if you say you are going to do it follow through with it. Hopefully sooner than later they will get the idea. Good luck to you.
 
Personally, with those kinds of symptoms, I'd want a second opinion.

EL is emotional liability--sometimes seen in ALS and it causes extreme responses such as hysterical laughing or the opposite even--with crying jags. Meds can control it.

There are reasons for aphasia--lots of 'em. I'd contact the ALSA and ask for a referral if no one here is in your area with specific doc recommendations.

Clear EMG generally means no ALS--but, for instance, an EMG on his leg won't tell them much if he's displaying bulbar only symptoms (But I'm not a doctor)

Good luck to you. I wondered about the FTD because from my limited reading--it causes more of completely socially inappropriate behavior, including things like a total lack of empathy among others. Sounded to me like he is well-liked and a nice guy.

A lot of PALS with FTD are very difficult to deal with, and other CALS here could help you more with those questions--as I know very little on FTD other than my reading by the CALS experiencing it with their PAL.
 
Thank you, so much, SadieMae! I have contacted them and we are scheduled for a Ruling Out appointment. The MDA is covering all costs for this, as Kaiser is not a supporter. Amazing!

I could not thank you more, for this lead.
 
Cub, You will probably see Dr Miller. A wonderful man. Dr Katz is also great, but a little intimidating. Write a single page of what your concerns are and read it to him. Take control of the visit. Our first visit with them lasted 4 hours, and my husband was already diagnosed for a year. As far as parking, park across the street in the garage, and ask for a voucher from Dr Millers receptionist when you check in, and you will only have to pay $10(one hour) It's the garage that is not on the same side of the street as the hospital. Good luck, and so glad I was able to help. HUGS Lori
 
Lori.... Thank you for the information! Our appointment is this Wednesday, and I'm pretty nervous. Doing a writeup is a great idea! I'm finding that the more I have to tell his story, over and over, that I'm actually forgetting some of the details. Does that make sense? I guess I'm just tired.

All I know, so far, is that we're starting with Nurse Bob! :)

Thanks again, for your gracious information.
 
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