Status
Not open for further replies.

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, all ...
Hoping somebody can help me sort symptoms out. I've never had ALS before (who has?!?) but I've also never been 72 before, and don't know what's what.

Have bulbar onset ALS, with symptoms so far confined to speech, swallowing and breathing (plus double and blurred vision, but the neuros refuse to talk about that. One even told me that double vision is "probably old age.")

I am noticing weakness in both hands and arms, but especially hands. Have also had very brief episodes where two fingers on each hand curl into the palm, and I have to gently straighten them out and hold them in correct position for a few seconds before they relax. That sounds to me like ALS. (This doesn't happen in both hands at same time, but has happened with both right and left hands.)

Can no longer lift a flat of bottled water, or twist lids off most jars, and it takes two hands to turn the key in my car's trunk. (However, in car-years, my Civic's almost as old as I am, so maybe the lock is getting worn out! LOL)

Understand that ALS weakness doesn't hit both sides at once, yet both hands seem equally weak. But ALSO, I have aching knuckles in my right hand when I wake up in the a.m., and the fingers and knuckles of right hand ache while typing. Both hands feel a little "weird" and uncoordinated.

The joint aches sound to me like arthritis ...or possibly too much computer mouse use (I'm doing a lot of writing each day). But of course, I'm obsessing about every twinge in my body, and wondering, "Is the ALS spreading out from bulbar yet?"

Also, my leg muscles ache when I wake up in the morning, but no leg weakness yet. I assume any aches in muscles are ALS related, but am not sure about joint pain.

Question: in ALS, can both hands/arms get weak at the same time? And is joint pain a part of it?

Am feeling weak and tired generally these days. I'm pretty sure THAT is ALS. Wish there were a users manual for all this -- including one for old age!

Beth
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Beth I am sorry to tell you but old age doesnt effect bulbar area unless you had a stroke.The fact that you are having the double vision also can be a sign of Myastania or MS . About weakness in both arms at once is rare in ALS however I had weakness in both arm the left being worse.

I would see a neuro right away and stop guessing it may be treatable

Pat
 

Shatzie

Active member
Joined
Nov 12, 2007
Messages
86
Reason
PALS
Diagnosis
02/2008
Country
US
State
OK
City
Tulsa
My weakness developed all over my body at the same time and I was still diagnosed with ALS by an ALS specialist.
 

JohnMc

Active member
Joined
Apr 12, 2008
Messages
50
Reason
PALS
Diagnosis
10/2008
Country
US
State
AZ
City
Phoenix
Beth

This is certainly an annoying issue with ALS. My symptoms began in the months before I turned 50, and most of the things I was seeing could have been attributed to 'getting old'. The difficulty swallowing, the slurred speech and the weakness have all been mentioned by other people as 'normal middle age' issues.

At least, for me, the weakness began in my right arm and hand (I am right-handed). When my right hand was clearly weaker than my left, I was able to conclude that this was definitely not 'normal'. I wonder if the weakness had begun on the left side, if I would have delayed seeing a doctor.

John
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Thanks, all.

Pat I was diagnosed with ALS on 5/5/08, and am trying as hard as I can to get into the UCLA neuromuscular center (paperwork, paperwork). Finally got my primary care physician to write me a prescription for Rilutek last week. Bulbar symptoms have been going on close to 2 1/2 years now, and I've been diagnosed with stroke, Progressive Supranuclear Palsy and MG by 4 different neuros, before the 5th and 6th neuros at a Myasthenia Gravis clinic made the call for ALS last month.

What I'm trying to figure out is which of my symptoms are ALS (and are a sign of its spreading), and which are just plain vanilla old age. I guess it doesn't really matter, since neither one is curable!

But when (if) I finally do get into UCLA (and will then be seeing my 7th neuro), I don't want to waste his time with a laundry list of irrelevant symptoms.

Thanks for the responses. I appreciate knowing that other people have experienced weakness on both sides ... as it "feels" like ALS in my hands, my left one esp. Not that I know what ALS "feels like" except for what I'm feeling.
Beth
 
Last edited:

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Hi Beth, I have read that the UMN part of ALS can make the joints hurt because of the muscles being too tight, My joints in my elbows both are usually hurting in the morning when I wake up, (R more than L) and at first I thought I was just sleeping on them funny, but I don't think that is it, I think maybe the muscles contract more during sleep and if I were awake just moving around would keep them looser, The neuro down at Hopkins did find brisk reflexes in arms, so that tends to confirm in my mind what is going on with me. Also my mouse hand is getting increasingly crampy and achy when I'm on the computer...If you have Bulbar onset of ALS, then you would have both upper and lower neuron involvement, and perhaps it would the the upper neurons causing your fingers to curl up and joints to hurt? I sure hope you're able to get in to the clinic soon. You've had a long wait since diagnosis, not to mention all the time previous to that! take care, :)
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
bETH I WENT THROUGH THE SAME DX EXACTLY. FIRST MG ,STROKE, BULBAR PALSY, MS ITS THE PROCSS OF ELIMATION.THE NEURO RULE OUT ALL OTHERS THAT MIMC ALS BEFORE A DX. THERE IS NO REAL TEST FOR ALS. SO ITS A WAITING GAME AS ALOT OF PEOPLE KNOW ON THE FORUM.
A STROKE USUSALLY WEAKENS ONE SIDE AND SHOULD GET BETTER WITH PT AND WOULD SHOW ON A MRI.. WHERE ALS GETS WORSE DOESNT SHOW ON A MRI AND PT WONT GET YOU STRONGER.
THE FACT THAT YOU HAD A STROKE MAKES YOU DX MORE DIFFICULT SINCE HALF OF THE NEUROS ARE CLUELESS ANYWAY.
SORRY BUT I MET ALOT OF CHARACTERS IN THE MEDICAL FIELD AND ITS BEEN A LONG ROUGH RIDE FOR ME GETTING A DX
GOOD LUCK
PAT
 

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
Hi Rose, beth

Beth I am sorry to hear that you are having a hard time. I don't really believe that old age could just appear overnight. Some of the symptoms could be attributed to age but not if you were not noticeing stiffness and weakness before.
I was wondering if my stiffness could be attributed to age, but then the last month I have noticed that my calves are smaller than they used to be. Also, I noticed that they have dents in them both though, thats the weird thing. I read that it only happens in one at a time. I don't feel much weaker though. I ride the bike, but I do notice that when I ride and workout really hard my muscles are more tingly and twitchy. My spine feels stiff especiallly around the cervical neck area. My emg was done on the arm and back and neck. The doctor said I did not have als. But now the calf thing has me concerned, what else could be causing muscle loss and dents. The dents are in the front next to the shin, does anyone know what might be causing this. Is this a symptom of als?
Take good care of yourselves
Robin
 

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
Just another quick question. Could you have an emg on the upper part of body that is clean, well, I did have some denervation in my arm. But the doctor did not seem concerned. But can als be missed if it is starting in the legs but they did not do an emg on the lower part of the body? Wouldn't als affect the whole body? I mainly have atrophy in my hand, which began 1 year ago, and now in my calves, bilateraly. No signs of extreme weakness in legs or arm though. With the extent of atrophy I have, if it were als wouldn't I have noticable weakness? Also, I started twitching about 7 months prior to the calf atrophy. Thanks
 

tmasters

Senior member
Joined
Feb 19, 2008
Messages
531
Reason
PALS
Diagnosis
08/2008
Country
US
State
California
City
Anaheim
Thanks, all.

...
But when (if) I finally do get into UCLA (and will then be seeing my 7th neuro), I don't want to waste his time with a laundry list of irrelevant symptoms.
...

Beth

Beth,

Sorry to hear you are going through this.

If you go to UCLA hopefully you will see Dr. Graves. His two main specialties are MG and ALS so he should be able to differentiate your symptoms. You shouldn't have to worry about "wasting his time"-- you will get a 2 hour appointment and he will ask LOTS of questions and give a thorough exam, then give you time to ask your own questions. I found him very easy to interact with.

BTW: make sure you go see him with a friend or loved one. As others have pointed out, you won't get a DX without somebody else in the room with you.

-Tom
 

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
sorry everyone I didn't mean to barge in on your thread...my bad.

Take care
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Just another quick question. Could you have an emg on the upper part of body that is clean, well, I did have some denervation in my arm. But the doctor did not seem concerned. But can als be missed if it is starting in the legs but they did not do an emg on the lower part of the body?
------------------------------------------------------------

Hi, Happy ... no "barging in" problem at all.

About your emg: My second EMG tested 10 areas of my body, on both sides, top and bottom, and found denervation in 3 areas ... the tongue (of course, that's where my problems started), the left trapizius and someplace else I can't figure out from the report. :)

The guy who did the first EMG in his office only tested my left side, arm and leg, and that neuro said it was completely "clean." My second EMG 6 months later at a clinic was MUCH more extensive. So it sounds to me as if they could easily miss something if they don't test comprehensively.

The neuro who diagnosed me said that denervation shows up in an EMG "months" before any symptoms show, so I would think that would make it even more important to test you all over. But I'm no expert.

Pat ... I agree completely on "clueless." And add "completely insensitive," too!

I've heard great things about Dr. Graves ... good to know I won't have to rush through my "symptom list," and that he will listen.
Thanks all for the feedback!
Beth
 

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
Hi Beth, Long time no talk. How are you? I haven't been on regularly and when I do come back on I lose track of where my posts were. How's exercise classes going?
I have been working a lot. I went back to the gym and it feels really great. Like I have mentioned here in a couple of different posts, that my calves are atrophing. It is not causing any weakness that I can tell, but they are definetly smaller and a little saggy. It's strange because I have always had really well developed calf muscles.

My emg was about 5 months ago. Mainly in my arm and he also did my neck. (ouch) but he said and I quote. "you probably have as much of a chance of having als as I do". I should have really been at peace with a statement like that, but because I experience such weird symptoms I did not find his comment reasurring. I really started to notice my calves getting smaller since then, and can find no reason for this to be happening. I still seem to be able to ride the bike with the endurance I have in the past, for that I am grateful.

I hope everyone had a good, safe fourth. Talk to you soon

Robin
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
Welcome back Happy

If you don't have any weakness in your calves, then that new atrophy you see (or think you see) is not due to denervation. You said you had been absent from the gym, so I'm willing to bet it is due to disuse. I'm glad to hear you're doing well. You sound . . . for lack of a better word . . . happy. :)
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi Beth, Long time no talk. How are you? I haven't been on regularly and when I do come back on I lose track of where my posts were. How's exercise classes going?
I have been working a lot. I went back to the gym and it feels really great.

Hi, Robin ... glad you're working out again. I've had to cut out cardiac rehab (treadmill, etc.), as last time I went, after just 20 minutes I was so wiped out, I couldn't get out of bed for a day and a half. So ... no more of that! Going to try just regular walking in neighborhood, as walking lessens my leg cramps at night.

My Pilates instructor is designing half-hour sessions for me that will use little or no weights and resistance ... I told her "concentrate on gentle stretching and range of motion." Even that little bit of exertion, however, gives me an "exercise high." I can feel the endorphins kick in!

I def. have weakness in left leg, and esp. left arm and hand. Something strange is happening with fingers of both hands. Can't hold the fingers together when extended. My little finger on right hand seems to be 1/2 inch separated from the others, and on the left hand, both little finger and index finger are in their own little worlds. I bet this is atrophy, or contractures, or something.

Neuro at UCLA said my aching knuckles and hand sound like too much computer use, and maybe a little arthritis. She said just take Tylenol or Aleve, but I take so blasted many pills now (and half of them I can't swallow most of the time), I'm just going to ignore the aches.

I have been so lucky to have survived this long with bulbar symptoms while the neuros tried to figure it out (I know how hard it is to diagnosed, and I was in complete denial about ALS ... hoping for ANYTHING but ALS), and I'm grateful to be still driving and functioning. I know this state won't last, but I count my blessings every day that I am able to get around today, and the heck with tomorrow.

Hope you're all having a great weekend.
Beth
 
Status
Not open for further replies.
Top