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andyvaughn

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Hi everyone - I have been reading thru everyones posts over the past few days, thanks for the time everyone has put in here... I have several questions - my husband is 51 years old, and over the past few months he has developed slurred speech, drooling, diffculty swallowing, esp thin liquids and pills, he makes odd noises at night, almost like he is chewing something, and he laughs/crys at seemingly inappropriate times. He sounds different when he laughs and crys now also. So, we are in the tedious process of a work up. He has had an MRI, multiple labs, x rays, and a lumbar puncture. Everything has been totally normal with the exception of his protein in his lumbar puncture was on the high end of normal. His neuro suggested he take B-50, and come back in a month. I asked if he was planning nerve conduction, and he said that it was too early, and that he would make a referral when the time was right. So, ... here are my questions. 1. What would you do if your neuro said that, wait it out?... or run to the nearest univerisit neuro program? 2. Has anyone had a diagnosis of ALS with symptoms similar to this? I have the handicap of being a registered nurse, which means I know enough to make myself a nut bucket, but not much else. My husband is very frustrated, his speech is continuing to get worse, especially when he is tired, I now often have to translate for him. Can a progressive bulbar palsy take hold that fast? I want to do the right thing here.. our neuro said, and I quote "either this is the tip of the iceberg, and he has the beginninngs of progressive bulbar palsy/als, or it will just go away"... I don't knwo what to make of any of it... any ideas?
 

Jeliota

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Take my advice for what it's worth, nothing:

In the old days (a few weeks ago) there was no urgency to learning a diagnoses of ALS. Now there just might be given what we are learning about lithium. In my opinion, just deciding to take a watch and wait method to diagnosing ALS is ridiculous given that there might just be something out there that will significantly slow progress. I would change doctors. EMG/NCV is the primary tool used to diagnose ALS--not the watch and see if it gets worse method. Go somewhere else.

Paul
 

siuska

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run to the nearest ALS/univerisity neuro program and demand an NCV/EMG...there is no reason your husband and you should suffer like this...things can be done to help him. You can find ALS centers through the MDA website.
 

Al

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Hi. I don't think it will go away. I'd be looking for the closest Neuro that specialises in motor neuron/AlS and get an appointment.
I'm no doctor but that's what I'd do given what you've said.
AL.
 

andyvaughn

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Thanks for your input

Thanks everyone who has taken the time to reply. My husband and I talked at length about it at dinner, and are going to get to another neuro. My husband is also having some weakness of his left arm, with what he describes as twitching. Has anyone else experienced any of these combined symptoms?
 

Geo

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Sounds like me .Same things .Lots of Speculation no answers .Like my wife said they are Practicing medicine
Get it . I was told i would be dead in 2 yrs. 8 yrs. ago .Mine started as Bulbar and then the legs . No Loss of strength . Have him squeeze your hand or fingers ,check this once a month .Connie interprets for me sometimes i have trouble forming the words ,i find of i holler i do better , mornings are my worst .I use a quad cane ,have for 3-4 yrs. My best Neuro told he thaught at one point Psuedo Bulbar Palsey but then changed that to PLS .I have stiffness and lack of coordination ,rapid motions are bad (knocking on table or Flipping hands over )Ataxic walk ,have tendency to drag foot or not pick feet up when walking i was 55 now 63 .Geo
 

Shatzie

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I was diagnosed with mild bulbar symptoms, but I have been told that is a rarity. On my third visit to my neuro he did a EMG and because it was abnormal and my reflexes were brisk, he sent me to an ALS specialist, who was able to get me in within two weeks. I had three days of tests in Houston at an outpatient wing of Methodist Hospital and was diagnosed with bulbar ALS. He considers it mild and is in hopes I am one of those people who will plateau soon and then we might have to reconsider later if it is really ALS. The earlier you are diagnosed, the earlier you can get on the meds and vitamins that are recommended. So I would push to get an EMG, even if they can only give him a "probable" diagnosis, it would be better than waiting.
 

andyvaughn

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Shatzie, ... were your symptoms similar to my husbands? How long ago were you diagnosed? How is your health now? ... I am calling a neuro this morning. It seems like my husband is getting worse so quickly, could ALS work like this? Last night he was unable to pick up a 40 pound bag of dog food without difficulty. My husband is a big strapping contractor... very unusual for him to be weak like that... what in the heck can ravage a person like this, and do it so incredibly fast. This all started around the holidays...what is going on?
 

Shatzie

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My symptoms started with slurred speech in late July. On a good day it is like a lisp, but most of the time I sound mildly drunk. In October, I noticed that my foot would drag 2-3 times a day when I would walk, now it is more like 10 times a day. In November, I began to feel like it was more of an effort to swallow, and after a excruciating time chewing a bagel, decided to give them up. Around Christmas I first noticed mild choking on fluids, and in January realized that I had mild atrophy in my ankles and shins. At this point my life is normal, but I have to work harder to do the same activities and I have to watch how fatigued I get.
 

vmd

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Geo:

You write that for you, slurring is worse in the morning and gets better during the day? If so, I have read that for many PALS it is the reverse.
 

andyvaughn

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What is PALS?

Forgive me, but I am naive to the language, what is PALS? ... Also, my husbands speech is also worse as the day progresses, he sounded pretty good this morning, and by this afternoon he was sounding very slurry - it is like he is drunk with a cold. That is the best way I can describe it.
 

vmd

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People or Persons with ALS, is what most consider a PALS.
 

brendafry

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Take my advice for what it's worth, nothing:

In the old days (a few weeks ago) there was no urgency to learning a diagnoses of ALS. Now there just might be given what we are learning about lithium. In my opinion, just deciding to take a watch and wait method to diagnosing ALS is ridiculous given that there might just be something out there that will significantly slow progress. I would change doctors. EMG/NCV is the primary tool used to diagnose ALS--not the watch and see if it gets worse method. Go somewhere else.

Paul
Please advise what we are learning about lithium - I am unfamiliar with new medical information regarding any drugs that may slow the effects of ALS. Thanks for any guidance to info on new medication.
 

ZenArcher

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Brendafry, nothing is proven. There was a study done in Italy on lithium carbonate that showed promise but it was small and did have some flaws. Having said that I am one of several people that have opted to start taking lithium.
 
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cheryilyn

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PALS
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Andy, i have not been on here for awhile. ijust read your post. i have bulbar onset als, i first noticed a droop in the left side of my face in aug. 05, some trouble swallowing sept. 05 by dec. when i first saw a neuro i was having difficulty talking she ordered a mri and said if it was normal not to worry. by june 06 when i was able to see her again (insurance prooblems) she was shocked i could not talk. so was sent to an ALS clinic. diagnosed sept 06 legs next wheel chair by june 07. now i have lost most use of my hands.
 
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