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4tloml

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Asking for questions to ask doctors…

I posted on your DIHALS re my husband several days ago after his 3rd neurologist referred him back for an EMG with the director of our ALS clinic. (First neurologist diagnosed bulbar-onset ALS in April 2013, sent him for EMG and 2nd opinion with ALS clinic director who said EMG didn’t “look quite like ALS” and sent him to 3rd neurologist, a movement disorder specialist who thought it might be Multiple System Atrophy. She's the one now sending him back because although he has the bulbar symptoms of MSA, he's not developing the hallmark orthostatic hypotension, bladder or other autonomic nervous system problems. Instead, he continues to have fasciculations and now atrophy--not symptoms of MSA but of ALS.)

I’m posting here, because as my husband’s symptoms develop, my sense is the first doctor got it right, and so I’m trying to prepare for his 2nd appointment with the ALS clinic neurologist. It’s time to, as Tillie called it, “name ‘The Monster’” just so we know what we’re dealing with. I guess I’m the type who wants to look it in the eye. I’m hoping that by listing his symptoms here and the tests run to date, you who have traveled this first part of the journey might recommend questions to ask or further testing to request to rule in or rule out. His appointment isn’t until Nov. 6th—feels like a long way off, but at least we’ll be traveling a bit. He has 2 business trips, and I accompany him now because, frankly, I’m afraid of him choking when he’s by himself.

Symptom History:

1st two symptoms—tremor in right hand, very shortly after, noticed slurring speech. Dysarthria has steadily progressed over 1 ½ years. Struggles to be understood.

Dysphagia started a little over a year ago. Has to keep chin down to keep from choking on liquids, still does several times a day. Never has liquid with food to avoid aspiration. Great difficulty eating—can’t move food around with tongue. Tongue and throat feel fatigued with eating/speaking.

Shortness of breath--has to take biggest breath he can to try to finish a sentence and sometimes feels out of breath for no apparent reason, just sitting in his chair.

Emotional lability—taking Neudexta, which helps some.

Hiccups—every day.

Fasciculations—1st neurologist showed me the fasciculations in his tongue. Can see them in his arms and legs {they really go crazy after he works out), but at other times (in the night) can feel them in his hands, chest, back, side.

Muscle atrophy—3rd neurologist noticed this and prompted referral back to ALS doctor. Atrophy came on very quickly in right hand and arm. He’s a pretty big guy with large upper body (58” chest) and I noticed last night his upper back was looking “lopsided.” I think the muscles of his shoulder/right upper back are beginning to atrophy as well. He said that several months ago his hand started feeling awkward when he signed his name and now he says he’s losing his grip in that hand.

Stiffness—he said his legs are feeling increasingly stiff. It’s very obvious watching him go up and down stairs. We used to hike miles together. A few weeks ago we couldn’t get down a set of stairs and ½ mile down the beach.

He’s continued to work out, not to increase, but just try to maintain level of fitness. We were out of town for 4 days and he said he felt like he lost fitness in that time—thought it was just a few days away from workouts, but “it’s not coming back.” (His words—I have to notice everything or dig for information. He either doesn’t notice or just ignores. Denial has always been his primary coping mechanism—HE will tell you that! And actually, not a bad one to have. It’s kinda working for him right now. :) )

What others have mentioned:
Besides speech and eating difficulty (pretty much all our family and friends notice that), our 26-yr.-old son having lunch with him mentioned he seemed to get fatigued just feeding himself several weeks ago—getting food on the spoon, spoon to mouth—hand began trembling again. Just before the doctor noticed the atrophy, a friend who was in the passenger seat while he was driving mentioned it looked like he was having trouble driving, especially turning corners/handling the steering wheel seemed awkward.

Tests He Has Had:

• MRI—July, 2013, Nothing indicated
• EMG—July, 2013, Didn’t look “quite like ALS,” did show some peripheral neuropathy
• LABS—July, 2013, No Myasthenia Gravis, No Kennedy’s/SMA, Metabolic Panel OK, Copper & Iron OK, No overt evidence of a monoclonal protein, CK was OK.
• Swallow Study—Feb., 2014--ENT noted a vocal chord tremor, thought possibly dystonia because of tightness in tongue, throat and chest. To repeat study Feb. 2015.
• Sleep Study—Nov. 2013—Complex sleep apnea, ~35 episodes/hour. REM Behavior Disorder. Now using “BIPAP autoSV Advanced” by Respironics. Down to ~ 5 episodes/hour.

I’m sorry so lengthy—wanted to put it all out there. But if you’ve been kind enough to read this far, what are your recommendations for us on Nov. 6th? Is there something you asked or wished you’d asked that you found or would’ve found helpful at this stage?

I so appreciate any guidance here. You guys are awesome (male/female inclusive). Any comic relief welcome, too, perhaps from you Bad Boys. You know who you are…and so does anyone else who’s been cruising these threads! ;)

I want to take care of my guy. He truly is The Love of My Life and I want him with me every second I can have him!
 

MaxEidswick

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>His appointment isnt until Nov. 6thfeels like a long way off

waiting, like ALS, sucks.

rember, IIWII ("It Is What It Is!") ... nothing is going to change, so reduce anxiety as much as possible, even if you need clonzipam (SP) or something like it.

Next, #1 don' fall
#2 stay away from sick people, especially respiratory stuff
#3 any sign of cold, flu, etc go to doc or urgent care
#4 load up on vitamins:

Centrum Silver Men 50+
Vitamin C
Vitamin E
Vitamin D3
Folic Acid
Mucinex

other things like insurance, legal you should ask about

check w/ alsa/mda for advice.

hang in there!


-----
Max - Thursday, September 18, 2014 12:59:18 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 

affected

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You seem to have it pretty much in order.

I think if you take that history with you, maybe in dot point it will help the conversation.

I also think that an ALS neurologist will now be more interested in doing his own examination if you know what I mean. I do think handing over a clear but concise history of symptoms helps, but this neuro should also have all the past test results to see the path behind as well.

If you get this diagnosis, then getting to a multi disciplinary clinic will be your first question - how soon can you start so you can get all the support of speech pathologists, PT, OT etc.
A clearly written diagnosis to allow you to access any insurance, VA etc.

Next questions will be for your lawyers to get will and living will etc in place.

In the meantime, try to practice living a day at a time. Not easy, but you need to learn it. If it is ALS, then you both have to learn to accept. Not easy, but we will help.

Maybe you can both find something nice to do between now and that appointment - make more quality time. You can of course spend that time worrying, but I've found it's how we take a journey that is most important, not where the journey is going.
 

gooseberry

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My husband had anti jo antibodies, heavy metals, thyroid testing, vitamin b12, vitamin d, lead as blood tests and , acetylcholine profile urine and blood. He had cervical.spine and brain mri and chest ct scan in addition to what you mentioned. The chest ct scan and cervical spine mri was because of his breathing difficulties.

I would say make a list of any issues you see or anyone has mentioned to.....like the lopsided back and possible atrophy. Changes in grip, balance, memory,ability to care for himself, changes in the amount of time it takes for him to do something,(my husband started shaving at a different time than he showered. When I asked he said he got too tired to do it all together).
 

nebrhahe53

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I hate to say it but it does sound suspiciously like ALS. Working out is generally not a good thing with ALS, you can actually damage the muscles even faster. Be careful, with ALS you cant replace muscles that are lost-they are gone forever.
 

Nikki J

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Keep working on a question list and consider what you need to know depending on how the visit develops. If ALS is confirmed then xyz. If it is still on the table but not confirmed what else do I need to rule out and how? If this is going to be your neuro who can you call with questions?( I have a primary nurse who I can call or email )
If it is ALS do you want to pursue trials? Take supplements?
The more organized you are both in presenting symptoms and questions the better answers you will get
Good luck
 

4tloml

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You all have provided a great list and place to start. Thank you so much for sharing your knowledge. Some of these I can get started on even before Nov. 6th.

Nebrhahe53: Wondered if that was the case--why I'd asked him about his workouts. He still thinks he's working out to prevent the progression of MSA. Once the doc said "not quite like ALS," as far as he was concerned, that ship sailed, forever and always. He doesn't consider that we are likely facing it down again. So I'm trying to get him to ease up on the workouts without discouraging his optimism. Thanks for the advice--I'll lean a little harder on those workouts now!

Hope this day smiles warmly on each of you. Thank you again for your help and wise words.
 

4tloml

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Don't want to open a new thread, mostly just need to vent and organize thoughts--maybe even rant a little--perhaps I should've gone to that thread. My husband's spine MRI came back and shows some "moderate spinal stenosis which is most severe at C4-5." So now the movement disorder neurologist is telling us this could be the cause of his right hand/arm/shoulder atrophy, although when asked, she admitted it could not explain all the other symptoms.

Meanwhile, my husband's convention was last week and it was a disaster. Walking from hotel room to convention rooms was exhausting--by third day he looked grey. (But wouldn't let me get a wheelchair.) Even yesterday, a week later, he still looked hollow and tired when he came in from work 2 hours early. Everything is getting worse--speech, swallowing, stiffness, weakness, atrophy. Still we wait while the doctor wants to call it anything else. It's just been so long now--I want him on the Rilutek and the Baclofen to slow this monster down. I want him out on disability, not running himself beyond recovery. And the only way to get those is to name it.

I'm just frustrated to tears waiting and watching him fail more each day. It has begun happening so fast. Last week's trip was so exhausting, he asked me to call the airlines and upgrade our next week's trip just so he could board early. When's he's willing to pay over $500 just for that--it is serious.

And those workouts I've been concerned about--I learned on the trip he's down to once a week because he just can't do them any more. Mostly, he does some stationary cycling and stretching.

This is like watching an oncoming train and I can't pull him off the tracks. And the doctors who can slow the train are busy looking the other way. I'm between screaming and crying.
 

GregK

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rant away, lord knows you deserve it!

sadly I can offer nothing more than a suggestion regarding the exercise: pool workout.
Get one of the doctors to request a PT with an outfit doing water PT. They can demonstrate exercises for both upper and lower body.
Use those exercises and stretches in the local gym pool and hot tub. No falling, little stress.

However, exhausting himself such as at the convention is bad short term and possibly long term regardless of what he has. We all resist (I gave up on my cane only after my last fall) but I hope he understands the risk...
 

Nikki J

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Greg is so right overdoing is dangerous by itself and increases risk for falls etc. You know of course instead of upgrading tickets he should be asking for a wheelchair. Like,Greg I also resist these changes for myself even though I know better.
I am so sorry you are in this waiting place. It is the worst part in many ways because, as you say, you want to be doing all you can to slow down the process. Have you asked the last neuro for riluzole? Now it is generic you may not need a prior approval from insurance so lack of formal diagnosis is not the barrier it was before Or would he not take it?
 

cheerleader

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Just info on the airlines- we always carry papers from the VA stating my hubby is disabled but have NEVER been asked to show them. When you arrive at the airport gate, you go up to the desk for that airlines and request early boarding for disability, and it is never questioned. They give you an early boarding card which you show when they announce early boarding. No charge on this. Some airlines let you select your seat when you board, (ie southwest) so we are able to get right up front with this early boarding. This will save you money and accomplish an easier flight. Good luck.
 

MaxEidswick

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>Get one of the doctors to request a PT with an outfit doing water PT. They can demonstrate exercises for both upper and lower body.
Use those exercises and stretches in the local gym pool and hot tub. No falling, little stress.

and you can't really fall in the water. this was a major step for my rehab. Also, fyi, I spent 5 1/2 mins on the exercise ike yesterday and my muscles hurt and were like rubber today, just got up from a three hour nap.
 

4tloml

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@Greg & Max -- He enjoys the water so I think your suggestions for water PT will be well-received. We have a pool (one reason I'm thinking we should remodel for downstairs bedroom and bath instead of moving) and I can see him using it more when he goes out on disability.

@Nikki & Cheerleader -- Thank you for the travel suggestions. He got his work to pay for the upgrade, so I'm not going to rock that boat any more. But we'll use that information when we take our "bucket-list" trips! Good to know it.

I did ask the first neurologist for riluzole but he wanted to wait for the ALS doctor to prescribe it. That's the doc who said the EMG/NC didn't look "quite" like ALS 15 months ago and sent him to Parkinson specialist (who is now sending him back to ALS doctor because it sure looks more like ALS than Multiple System Atrophy now). But at least we have the paperwork from first doc that states a diagnosis of upper/lower motor neuron disease to carry for the airlines when we need it.

Come Nov. 6th, I don't plan on leaving the center until that riluzole prescription is ordered!

Great advice. Thank you all so much!
 

gooseberry

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My husband also has c4-5 spinal stenosis . We brought the mri disk for the neuro to review. They were able to rule out the dtenodis as a cause of his symptoms.
 

MaxEidswick

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>Multiple System Atrophy

possibly one of the few things worse than ALS -- the was an 8 pm candle lighting for Multiple System Atrophy last friday ...
 

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