Does this sound like ALS?

[BettyJ]

Hello Everyone

I wrote before that I was in the process of being diagnosed with ALS. My mother passed away from this in 1989. It would appear that the neurologist has abandoned me, and I have started going to a new doctor. She is doing every test in the book and is referring me to an ENT and a new neurologist. How common is this?

Also, my left hand started to atrophy and now it has flattened out. In the morning when I wake up my limbs are fine..well, not fine, but more functional... much more functional.

My voice has been gone since February and I never know what is coming out. One day, my voice returned perfectly.

I have fallen 7 times .. no more..and at one point I couldn't take a shower by myself. I literally could not get in and out of the shower. Now I can.

I am so confused. Does this sound like ALS? I don't recall my mom doing this.

Can anyone shed any light on this for me please?

 

[brooksea]

Very sorry about your mom, Betty.

With ALS, there is no going back. You lose it and it is absolutely gone.

When you say your voice is gone what do you mean? The voice just doesn't disappear and then return with ALS. The tongue becomes atrophied and slowly you can no longer get the words out.

I hope you can get some answers from your doctor.

 

[BettyJ]

My voice has not been normal since January. However, it comes back in varying degrees, but it is so slow. My tongue still moves well I think, but my speech is so slow. My hand goes up and down, but I have muscle fatigue and definite weakness,

My new doctor said what you said. I am so scared. I don't know what is wrong with me and she has ruled out so many things. I do have a b12 deficiency though and am taking tablets for that. i think I am going crazy

Thank you for answering. I thought with my Mom, when it's gone, it's gone..I hope they come to some conclusions soon as this is heart wrenching.

 

[brooksea]

Have you had an EMG? Have you gone to an ALSA/MDA certified clinic?

 

[joelc]

Have you been to the ALS Clinic at GF Strong in Vancouver? They are wonderful and if you have not then I strongly recommend you do.

 

[BettyJ]

Thank you Everyone

Can I self refer to the ALS clinic? Does this sound like anything that anyone has experienced? I also have puffy eyelids.

 

[Al]

You'll probably need a referral and puffy eyelids is not a sign of ALS.


AL

 

[BettyJ]

Should I ask for a referral?

 

[BettyJ]

Very sorry about your mom, Betty.

With ALS, there is no going back. You lose it and it is absolutely gone.

When you say your voice is gone what do you mean? The voice just doesn't disappear and then return with ALS. The tongue becomes atrophied and slowly you can no longer get the words out.

I hope you can get some answers from your doctor.

Hi

I mean that I speak slowly,and that I cough often. One night, my voice came back completely. My tongue is fine, I don't seem to be able to say words like house or mouse. The s clogs up in behind my nose. I don't slur. It's like my adenoids are weird. I don't, touch wood, have trouble swallowing so far and I've gained 20 lbs!

i was worse in March, when my jaw kept seizing up, but now I know I have dislocated jaw. I am a mess and am so stressed. I really appreciate your input. Thank you

 

[BarryG]

Well it certainly doesn't sound like bulbar onset ALS to me, or at least anything like my experience.

 

[Karin Bolette]

I have to agree with Barry, my voice is slipping away monthly and it isn't coming back. One doesn't usually gain weight but looses weight. Yes in Canada you must have a referral from your GP to an ALS Cinic. All specialists must be referred to. If your gp would support it, I would ask for a referral, just so you can rule out ALS. I went to a normal neurologist for a little over a year and he was useless. It wasn't until I had a positive swallowing test and another doctor who confirmed I had MND that my gp referred me to our ALS Clinic and things progressed while.
I don't think you have ALS either, but if one of my parents had ALS and I experienced any of their symptoms I too would want it ruled out, as opposed to looking for it. Once you get ALS ruled out then you can go on with your life.
An appointment with an ENT might be the most useful for you- karin

 

[BettyJ]

Hello again everyone and thank you all for responding.

My new doctor says that I mystify her and she has sent me to both an ENT and a neurologist who specializes in MS. Who know at this point? On Monday, I could clearly articulate words at a slow speed, then, in the middle of the afternoon, something felt as though it fell down into my throat and almost choked me. It wasn't food. I think it was phlegm. I haven't been able to speak at all since then and I've just about had it.

How do you all keep your spirits up? My Mom either suffered silently, or didn't have the same symptoms as me.

No drooling yet....but I hurt all over........

 

[BettyJ]

Well it certainly doesn't sound like bulbar onset ALS to me, or at least anything like my experience.

Thank you so much

 

[Mike27]

Hi Betty,

Like someone said earlier, the symptoms coming and going doesn't sound like ALS, but that's best left to the neuro.

In terms of keeping spirits up, what worked for me was volunteering. I sure didn't want to at first and had to force myself out the door, but helping others was better than any pill I could have received! I could sink my teeth into a project, whether fund-raising, advocacy etc, and as a result I stopped thinking about me and my troubles.
That was my approach and my $.02.

Good luck