Bulbar symptoms recap

[BethU]

It was either this or do the taxes. Hopefully somebody will find this useful.

List of Bulbar-onset ALS symptoms over 3 years.

? means I’m not sure it’s connected to ALS or FTD.
** means it’s still continuing.
These are not in accurate sequence, but generally by year.
Not sure about the “perception/euphoria/language” issues. Perhaps FTD ? For a deadly serious disease, ALS sure has some stupid symptoms.

----------------------------------------------------------------------------------------------

? ** mid 1980s -- Marathon X-treme yawning bouts begin. (still continuing).

? ** late 1990s -- Inappropriate outbursts at work. Emotional lability? FTD?

? spring 2002 -- Sudden dizziness, loss of balance, and shortness of breath. Lasted several weeks. Many tests, no explanation from PCP, cardiologist or neurologist

? ** spring 2002 -- Constant twitching of right lower eyelid. (it’s still twitching, but there has been no weakness or atrophy there, so I think this is a nervous tic.)

** 2004 Frozen big toe on left foot. Cannot wiggle or bend it.

? December 2005 -- Again, sudden dizziness and shortness of breath. Legs buckled under me on treadmill. Dizziness and s.o.b. lasted several weeks. Doctors found nothing wrong, but in angiogram looking for cause, poked a hole in artery, resulting in emergency heart surgery, followed by pneumonia.

2006

** March -- Slurred speech began in hospital after heart surgery. Also, double vision reading and rapidly deteriorating distance vision.

Summer to winter -- Gasping for breath while talking, very dry mouth. Difficulty chewing and swallowing solids.

** December -- ENT doctor noticed tongue fasciculations; because of this and slurred speech, referred me to neuro and speech therapy. Fasciculations were tiny quivers all over surface of tongue. I had no sensation of them.

2007

? ** Shortness of breath continues. (could be heart problem)

** Difficulty drinking liquids (choking, aspiration, liquids run out of mouth)

** Delayed swallowing

** Lip seal deteriorates.

Waking up at night with waves of goosebumps running up and down body.

? Changing food cravings: can only stand to eat one or two specific foods, such as potato salad and yogurt.

? Inability to tolerate spicy odors and flavors.

** Emotional lability/crying

** Stiff face ... smile becomes a snarl ...cannot show expression. Mouth begins to droop open to right.

** Notice twitching on web of skin between thumb and index finger both hands. Cannot feel it.

? December, respiratory failure, ER, entubation, hospitalized 3 weeks

** Bouts of “altered perception” ... the world looks different, as if I’ve never seen it before ... accompanied by sense of rapture, euphoria, ecstasy. Is this part of emotional lability or FTD? EL meds blunt the euphoria down to a sense of joy and pleasure, but do not affect the altered perception. (Never took LSD so these are not flashbacks. :razz

2008

** Hands suddenly clench and curl down toward wrist.

** Individual fingers suddenly curl down toward wrist

** Left index finger gets funky, partially bent; cannot straighten

** Cannot bring fingers in either hand together when fingers are straight.

** Foot “cramps?” ... foot (right or left, occasionally both) being pulled upward toward shin, or downward toward back of leg, or curling to side. Extremely painful.

Violent seizures in the middle of the night. (Five occurances)

Fascinating visual hallucination. (Only happened once. Would enjoy more.)

** Waking up with chattering teeth and trembling (shivering?)

? ** Body temperature frequently fluxates downward. Once down to 92 F.

** Limping on left leg in morning

** Brief but intense muscle aches in one arm or the other when waking.

“Buzzing” feeling under skin

** Upper eyelids change shape ! (Had been wrinkled skin; upper eyelids turn smooth and youthful again ! No surgery. Go figure.)

** ? Left lower eyelid starts twitching along with right one (another nervous tic?)

** Takes enormous amount of time to eat -- 45 minutes per cookie. Cannot move food around in mouth, except with fingers.
.
** Reguritation of swallowed soft foods and liquids

Violent spitting out of food in attempts to swallow

** Excess saliva

** Thickened saliva

** Drool

? Sudden odd headaches ... like a sword going through my head front to back, from temple to above ear ... sudden, very painful (enough to make me jump), only lasts a few minutes..

Hyper gag reflex, followed some months later by ....

** No gag reflex

** Arm strength diminished, cannot lift full kettle of wate

** Atrophy in both hands, forearms and tongue

** Soft twitches in left forearm. Cannot feel them.

** Stronger twitches in left shoulder and bicep, which I could feel occasionally.

** Language problems: frequently cannot recognize individual words in print or on computer, including ones I have just typed. Once, could not recognize any words on a page, including small ones (and, the). An hour or so later, I could read again. This is a continuing problem, happens dozens of times a day.

** Difficulty (sometimes impossible) using small gizmos ... paperclips, buttons, keys, zippers. Buttons, forget it.

** Began taking Zenvia - improved energy, complete control of lability (whew!)

Voice becomes very nasal and high-pitched alternating with hoarse, gravelly sound.

Muscle ache/pain up left side of neck; does not last long

** Upper/mid back ache in afternoons, after standing or walking, or when physically tired. Rest cures it.

** General weakness and exhaustion. Loss of ambition and motivation. Zombie like -- sit and stare into space. (lability med addresses this)

** Weakness in left leg.
.
2009

** Speech gone completely. People cannot even tell whether I am saying yes or no. Most I can manage is “eh.”

** Currently voice very soft and hard to hear, about the level of a low murmur.

** 3 violent falls

** By staring at my face in a mirror, I can see tiny soft, slow twitches below my right lower lip (the side that droops) and above my eyebrows. With a magnifying mirror, I can see very small, soft twitches elsewhere around my mouth, and in my forehead.

** Noisy -- I continually grunt and vocalize on exhales. Deep “baritone” sounds. (OK, contralto.) Gets louder with exertion. I cannot stop myself from doing this.

** Tongue has stopped fasciculating. Cannot protude it beyond lower teeth or move it more than 3/4 inch either way.

** Foot drop

** Slight atrophy in both legs

** Knees feel like they will buckle under me but haven’t so far.

** Balance very unsteady, especially in mornings.

-------------------------------------------

Currently:
DynaVoxVMax / LightWriter /Feeding tube / BiPap / Suctioning device / Rollator walker /Leg brace on order / Cough assist on order / Evaluation of home and (I guess) measurement for power chair in process of approval / Caretaker assistance at home 3 afternoons a week thanks to long-term care insurance policy.

FVC is 57%, down from 78% June, 2008.

Still driving short distances / walking / hands about 75% usable, except for thumbs / sleep OK (when not having seizures or goosebumps) / after 4 new pairs of glasses, distance vision is stable, but double vision while reading continues to worsen / limited eating by mouth ... only for treats and meds / have lost 24 pounds since bulbar symptoms began in ‘06. Was able to gain 10 pounds last summer, but lost it again and now find it impossible to gain, but weight seems to be stable for now.

_______________________________________

So, when did ALS begin? Mid-’80s with bouts of yawning? 2002 with “first twitch”? 2005 with frozen toe? 2006 with slurred speech?

Unless I get a whole bunch of new symptoms fast, I guess I have to do the taxes. :mrgreen:

 

[Al]

Boy, Beth that's quite a read. Not quite War and Peace but a large list of symptoms, events. It's amazing you are as upbeat as you are.

AL.

 

[BethU]

It's the euphoria and the eyelids. :lol:

 

[thelma313]

This is very interesting, Beth. Although it makes me feel sad that you have been through so much. However, it is inspiring to me that despite all of these symptoms that you are still so positive and have such an amazing sense of humour through it all. My Dad has been a real yawner for many years... if I remember correctly since the late 80's. It was a running joke in our family. He used to yawn really wide and loud and make us all laugh. Your list makes me wonder if that was an early sign. Thanks for taking the time to write this all out for us. Your avoidance of taxes also consoles me. Yay, I'm not the only one!

Keep on being amazing, Beth!

 

[rocmg]

hi beth... i'm glad you are keeping upbeat and so pleased your mobility still seems good! i was curious, as one who has been through so much, was ALS a scarier prospect than Progressive Supranuclear Palsy? I know it's hard to try and quantify which is the worst of a bad bunch... but mum is the only person with ALS in our town. Another woman died recently from PSP, and another a few years back from Multiple System Atrophy.

 

[brendapals]

wow beth-quite interesting reading, as always!

Oh, and can you share some of that euphoria with me?:roll::roll::roll:

Just jokin', you truly are an inspiration to us all,
hugs to you!
brenda

 

[BethU]

I rejected every diagnosis and possibility neuros brought up, except MG. It seemed like they were all totally out in left field ... nothing like that was going to happen to ME! My symptoms seemed so mild ... slurred speech and I needed new glasses ... big deal!

When I learned about PSP, it did scare me more than ALS, because what I read is that it is a dementia and not an easy one to have or to live with. I read a PSP forum for a while, but it was so depressing I had to stop.

 

[Zaphoon]

Beth,

You inspire me to aspire to the same level of grit and "Damn this disease!" attitude! You are my role model for making it through tough times undiminished.

Bless You!

Zaphoon

 

[laurel]

Beth,
You make me cry and you make me laugh. Reading some of your symptoms sure makes me wonder about some sort of brain tumor happening i.e. the seizures, the pain, the language problems. But I am sure you must have had every test known to man by now. I continue to admire you so much.
Laurel

 

[handinhand]

It was either this or do the taxes. Hopefully somebody will find this useful.

List of Bulbar-onset ALS symptoms over 3 years.

? means I’m not sure it’s connected to ALS or FTD.
** means it’s still continuing.
These are not in accurate sequence, but generally by year.
Not sure about the “perception/euphoria/language” issues. Perhaps FTD ? For a deadly serious disease, ALS sure has some stupid symptoms.

----------------------------------------------------------------------------------------------

? ** mid 1980s -- Marathon X-treme yawning bouts begin. (still continuing).

? ** late 1990s -- Inappropriate outbursts at work. Emotional lability? FTD?

? spring 2002 -- Sudden dizziness, loss of balance, and shortness of breath. Lasted several weeks. Many tests, no explanation from PCP, cardiologist or neurologist

? ** spring 2002 -- Constant twitching of right lower eyelid. (it’s still twitching, but there has been no weakness or atrophy there, so I think this is a nervous tic.)

** 2004 Frozen big toe on left foot. Cannot wiggle or bend it.

? December 2005 -- Again, sudden dizziness and shortness of breath. Legs buckled under me on treadmill. Dizziness and s.o.b. lasted several weeks. Doctors found nothing wrong, but in angiogram looking for cause, poked a hole in artery, resulting in emergency heart surgery, followed by pneumonia.

2006

** March -- Slurred speech began in hospital after heart surgery. Also, double vision reading and rapidly deteriorating distance vision.

Summer to winter -- Gasping for breath while talking, very dry mouth. Difficulty chewing and swallowing solids.

** December -- ENT doctor noticed tongue fasciculations; because of this and slurred speech, referred me to neuro and speech therapy. Fasciculations were tiny quivers all over surface of tongue. I had no sensation of them.

2007

? ** Shortness of breath continues. (could be heart problem)

** Difficulty drinking liquids (choking, aspiration, liquids run out of mouth)

** Delayed swallowing

** Lip seal deteriorates.

Waking up at night with waves of goosebumps running up and down body.

? Changing food cravings: can only stand to eat one or two specific foods, such as potato salad and yogurt.

? Inability to tolerate spicy odors and flavors.

** Emotional lability/crying

** Stiff face ... smile becomes a snarl ...cannot show expression. Mouth begins to droop open to right.

** Notice twitching on web of skin between thumb and index finger both hands. Cannot feel it.

? December, respiratory failure, ER, entubation, hospitalized 3 weeks

** Bouts of “altered perception” ... the world looks different, as if I’ve never seen it before ... accompanied by sense of rapture, euphoria, ecstasy. Is this part of emotional lability or FTD? EL meds blunt the euphoria down to a sense of joy and pleasure, but do not affect the altered perception. (Never took LSD so these are not flashbacks. :razz

2008

** Hands suddenly clench and curl down toward wrist.

** Individual fingers suddenly curl down toward wrist

** Left index finger gets funky, partially bent; cannot straighten

** Cannot bring fingers in either hand together when fingers are straight.

** Foot “cramps?” ... foot (right or left, occasionally both) being pulled upward toward shin, or downward toward back of leg, or curling to side. Extremely painful.

Violent seizures in the middle of the night. (Five occurances)

Fascinating visual hallucination. (Only happened once. Would enjoy more.)

** Waking up with chattering teeth and trembling (shivering?)

? ** Body temperature frequently fluxates downward. Once down to 92 F.

** Limping on left leg in morning

** Brief but intense muscle aches in one arm or the other when waking.

“Buzzing” feeling under skin

** Upper eyelids change shape ! (Had been wrinkled skin; upper eyelids turn smooth and youthful again ! No surgery. Go figure.)

** ? Left lower eyelid starts twitching along with right one (another nervous tic?)

** Takes enormous amount of time to eat -- 45 minutes per cookie. Cannot move food around in mouth, except with fingers.
.
** Reguritation of swallowed soft foods and liquids

Violent spitting out of food in attempts to swallow

** Excess saliva

** Thickened saliva

** Drool

? Sudden odd headaches ... like a sword going through my head front to back, from temple to above ear ... sudden, very painful (enough to make me jump), only lasts a few minutes..

Hyper gag reflex, followed some months later by ....

** No gag reflex

** Arm strength diminished, cannot lift full kettle of wate

** Atrophy in both hands, forearms and tongue

** Soft twitches in left forearm. Cannot feel them.

** Stronger twitches in left shoulder and bicep, which I could feel occasionally.

** Language problems: frequently cannot recognize individual words in print or on computer, including ones I have just typed. Once, could not recognize any words on a page, including small ones (and, the). An hour or so later, I could read again. This is a continuing problem, happens dozens of times a day.

** Difficulty (sometimes impossible) using small gizmos ... paperclips, buttons, keys, zippers. Buttons, forget it.

** Began taking Zenvia - improved energy, complete control of lability (whew!)

Voice becomes very nasal and high-pitched alternating with hoarse, gravelly sound.

Muscle ache/pain up left side of neck; does not last long

** Upper/mid back ache in afternoons, after standing or walking, or when physically tired. Rest cures it.

** General weakness and exhaustion. Loss of ambition and motivation. Zombie like -- sit and stare into space. (lability med addresses this)

** Weakness in left leg.
.
2009

** Speech gone completely. People cannot even tell whether I am saying yes or no. Most I can manage is “eh.”

** Currently voice very soft and hard to hear, about the level of a low murmur.

** 3 violent falls

** By staring at my face in a mirror, I can see tiny soft, slow twitches below my right lower lip (the side that droops) and above my eyebrows. With a magnifying mirror, I can see very small, soft twitches elsewhere around my mouth, and in my forehead.

** Noisy -- I continually grunt and vocalize on exhales. Deep “baritone” sounds. (OK, contralto.) Gets louder with exertion. I cannot stop myself from doing this.

** Tongue has stopped fasciculating. Cannot protude it beyond lower teeth or move it more than 3/4 inch either way.

** Foot drop

** Slight atrophy in both legs

** Knees feel like they will buckle under me but haven’t so far.

** Balance very unsteady, especially in mornings.

-------------------------------------------

Currently:
DynaVoxVMax / LightWriter /Feeding tube / BiPap / Suctioning device / Rollator walker /Leg brace on order / Cough assist on order / Evaluation of home and (I guess) measurement for power chair in process of approval / Caretaker assistance at home 3 afternoons a week thanks to long-term care insurance policy.

FVC is 57%, down from 78% June, 2008.

Still driving short distances / walking / hands about 75% usable, except for thumbs / sleep OK (when not having seizures or goosebumps) / after 4 new pairs of glasses, distance vision is stable, but double vision while reading continues to worsen / limited eating by mouth ... only for treats and meds / have lost 24 pounds since bulbar symptoms began in ‘06. Was able to gain 10 pounds last summer, but lost it again and now find it impossible to gain, but weight seems to be stable for now.

_______________________________________

So, when did ALS begin? Mid-’80s with bouts of yawning? 2002 with “first twitch”? 2005 with frozen toe? 2006 with slurred speech?

Unless I get a whole bunch of new symptoms fast, I guess I have to do the taxes. :mrgreen:

Hi Beth, Thanks for sharing all of your history with us... You have been through so much...I have been diagnosed a couple of months ago.Bulbar.. I am still trying to deal with all of this and taking it in. I just sat and cried when I read you email...This is not how any of us thought we would live the rest of our life... So very sad. I pray I can do this gracfully. Lin

 

[BethU]

Lin ... it really takes a while to wrap your mind around this. (Or it did me.) You're so right ... it just didn't sound like my "story" either. Right now with the emotional issues under control, most of my problems are mechanical. You have to figure out new ways to turn keys, swallow milkshakes, make a phone call, master all these gizmos.

Thank heavens there is relief for many of our symptoms. And thank heavens we remain pretty much "ourselves" through all this.

Laurel: The seizures are very puzzling. I had an EEG a few weeks ago, and an MRI, but haven't gotten the results of the MRI. The neuros report on the EEG was that everything was normal "for my age." :evil: That tells me a lot! A friend of a friend of a relative's college roommate is a neuro (and he's said to be rather on the eccentric side, but no bow ties, I hope) and he's coming here Friday to talk to my husband and me on a more personal level. So I'm making a list of questions, and the seizures will be on the top of the list.