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Phil's wife

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Joined
Apr 19, 2010
Messages
141
Reason
Lost a loved one
Diagnosis
05/2010
Country
US
State
NC
City
Wake Forest
Hello,

Hoping to get some much needed advice or suggestions with this. Going to try to sum this up briefly...

Phil has been having progressively slurring his speech for almost 2 years. Not until recently (60days) have things progressed to lead the neurologist into ALS. And since then a lot more has progressed.

slurred speech
fasciculations
fatigue
inability to multi-task as normal
memory loss
not thinking as "sharp and quick" as he used to
hand weakness - can't squeeze my hand, trouble with opening water bottles (last 60 days)
left leg weakness and visually smaller than other leg (60 days)
neck soreness (30 days)

I realize the hands and leg weakness has probably been going on longer, he just didn't notice it until the last couple of weeks. We know he wasn't this bad 30-60 days ago at his last neuro exam though.

Tests - MRI, bloodwork, EEG, EMG, nerve conduction, barium swallow

First neuro (we like) feels it is ALS based on those test results. Wanted to confirm with an ALS specialist. We saw specialist today, he feels it is NOT ALS due to the EMG showing more abnormal results with sensory nerves than motor nerves. He thinks it is Kennedy's disease, although from what I read about Kennedy's it progresses much slower.

We were unhappy with the doctor today because he did not even check Phil's hands, and to me that is a major symptom to look at! He wanted to order a DNA test at their other office but I told him we were seeing someone at Vanderbilt neuro center tomorrow. He basically shut down at that point and offered us no more of his time.

Needless to say we were mad when we left. OH, and on the chart for "billing" purposes he wrote diagnosis as ALS!

Phil is wanting to move forward with some relief from these fasciculations and get moving trying to get a handle on this instead of just sitting back waiting for appointments while we watch his symptoms get worst.

I really feel we need to put our foot down tomorrow and try to get some medication going if we must wait for different tests results to rule other things out.

Anyone else go through this mess while trying to get some answers?

Thanks for any advice or suggestions that can be given.

Thanks, Stephanie
 
I agree about putting your foot down, but there really is no medicine that will stop the fasticulations. Baclofen will help with spasms, but nothing really stops the fasticulations. My husband looks at them now in a friendly way, as long as he has them, he knows he still has some muscle left. Good luck HUGS Lori
 
I made them do the test for Kennedy's after my diagnosis - still hoping then it could be something else. Might be worth a try. There's not a lot of advantage in rushing towards an ALS diagnosis in most cases. Now I do think there may be some insurance benefits particularly for veterans in terms of assistive equipment, wheelchair vans, etc. But unfortunately the only medicine for ALS is hardly effective at all and doesn't make a noticeable difference for most people.

I hope you do get some answers soon. But if there is a real chance it is not ALS, I would explore that direction and hope your husband has something less serious.
 
When I saw the heading of this post, my heart just leapt out in sympathy! So many I have come across since this e=adventure began have been arrogant, uncaring, unbelieving, unlistening. IT is weird. They are attitudes I have not come across before with other illnesses; I thinki it is because they are unsure and are trying to bluff their way through and could never admit a patient knows more about his own body than they do. I still get FURIOUS when I think about those bastards saying it was psychological. LEt them try having my legs!
Only one doctor so far has had the grace to admit he was not experienced or qualified enough and HE was the one who has finally sent me to the proper ALS specialist.
So cannot help re the diagnosies but can certainly empathise re damn DOCTORS!

Wow, that was exhausting;-)
 
Hi, well, we got answers yesterday. My husband was diagnosed with ALS, bulbar onset. I'm sorry for him, for us and for all that are reading who are in this same boat. My prayers are that he will be with us for as long as he is comfortable and we will have many more years together.

The search is on for whatever I can do to keep him healthy, mobile and happy for as long as we can.

With a heavy heart,

Stephanie, Phil's wife
 
Stephanie, I am sorry about Phil's diagnosis. I know how hard that is and if I can help answer any questions about this bulbar beast just let me know. I have been lucky enough to have encountered great doctors so far but it really helps to be your own advocate and to be informed before hand so that is what we are here for.

Barry
 
so sorry .... you will have a lot of support and friends here
 
Hello Stefanie- I'm sorry for your pain, I know it only too well. My husband was ill for 6 years and never had a firm diagnoses- turned out to be a rare blood disorder as a result of environmental hazards and died of suicide because he received so little support from our medical community. lived in a small town then. I had been seeing a cardio for over 1 1/2 years due to SOB but am now diagnosed with Bulbar ALS< MND and have good medical care- living in Toronto. I have come to the point that what will be will be and try not to have your whole life wrapped up with doctors- it's true they are arrogant, dismissive and a real pain but we need them and without them it is worse, even when we feel they are not answering our questions and our needs. Try to focus on the time you and your hubbie have together- make each day count so when you look back at this time you can do so with love not anger and resentment. I'm not saying don't push for the right help- by all means but try not to focus your whole relationship with your hubbie on his disabilities and difficulties it will only make it more difficult.
Take each smile, squeeze of the hand even if it's limp and hold onto it- carry it with you through your day and remember love- Karin
 
Stephanie, My husband was diagnosed July 2009 with Bulbar Onset. I will hold your hand and share anything that I know. If you can, do something now while you still can that will give you incredible memories to look back on. We took a trip to DisneyWorld in November! sending you praire courage and hugs! Kay Marie
 
All I can do is send sympathy, love and all the support possible
So so sorry
Iris
 
I'm sorry to hear about the diagnosed of your husband. Mine also has Bulbar ALS.
 
Hi Stephanie!
You asked about frustrations with doctors..I would add especially neurologists. My first symptoms were slurred speech and fatigue. I was referred to a neurologist who immediately concluded that I had had a mild stroke. One MRI and and an ultrasound confirmed I didn't have a mild stroke. That's when the neurologist said on my second visit: "I don't know what you have but thank God it's not ALS". From then on he was of no use to me because he was convinced my symptoms were all in my head and due to depression. (When doctors don't know what a woman has they put it down to depression). He even prescribed antidepressants which I never had filled. I ditched that jerk after the fourth visit. Meanwhile I spent hours on the internet researching my symptoms. Mostly it was "I don't have that" or "Thank God I don't have that". Finally I found an obscure piece on Progressive Muscle Atrophy which is related to ALS. It fit all my symptoms to a "T". I then tried another neurologist and asked him point blank if I could have PMA. One MRI, one nerve conduction test on my tongue and only two visits confirmed I had ALS (I still call it PMS). This is all by way of saying, keep looking for the right neurologist and ASK him/her if your loved one could have ALS. I think the diagnosis is so devastating that neurologists might look for ANY explanation so they don't have to be the bearer of bad tidings.

Shilly
 
Spot on, SHILLY§ and what is interesting is that they seem to be the same the world over!
 
Yes, someone even recently told me the asian doctors especially (which is the doctor I referred to in my original post) are taught to postpone telling a patient they have a terminal illness to save them from the worry and depression, etc. I have an issue with that, we pay them to tell us what we have, not make decisions like that for us.
 
hi stephanie i to have bulbar onset i wasdiagnosed in aug 09 they believe it started in 07.anyway my speech is slurred i sound like a drunk havent drank in ten years.i have muscle wasting in my arms where you can literly see them just jumping around .its an awlful disease youcan write me anytime i will be there for yas
i now have a feeding tube i only use for breakfast and lunch to give my throat muscles some time to not over fatique .i hope your husband is dealing with this ok have him talk with me im sure we will help each other in the long run jeffp
 
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