can it be ALS

[sandradenise]

I have gone to Doctors for about 2 years . I have muscles cramps and twitching all through out my body including my tongue which is really weird. I can barely walk any distant and cannot get up off the floor or even from a squat without help or crawling to a chair and pulling myself up .

I have a hard time swallowing and choke even in drinking water. I cough after and while I am eating and my voice sounds weak and hoarse most of the time now.

My arms and hands cramp and twitching and it is hard to hold a normal size pen and to button things and reposition anything I hold. I have to use the other hand just to turn my rings around my fingers. My muscles look so funny now and are weak.

I have become clumsy by dropping things and tripping and falling. I have a positive Babinsky test, My toes flair upward and out. My EMG popped like popcorn, but he only does one leg. That I don't understand why just one when the whole body has signs and syptoms. Trying to walk heel to toe I fall all over the place. I have no balance anymore. After the visit the dr says come back in 3 months unless you feel worse. Do all of them say that? :?:

 

[halfin]

Wow, Sandra, that sounds terrible! I can't believe your doctor would just tell you to come back in three months, you sound very ill and should be treated or at least diagnosed. I don't know if it would be ALS but it certainly sounds like something serious.

In terms of possible ALS, you say your EMG "popped like popcorn". Can you give any more details about what exactly they saw? Generally they look for several different kinds of signals, including fasciculations, fibrillations, polyphasic units, giant units, etc. It is possible that they might have seen only fasciculations, which is actually considered a benign result as far as this particular test is concerned. Only when they see some of the other kinds of signals would that point to nerve death or damage and possible motor neuron disease.

But anyway, even if you don't have nerve problems you do seem to have something serious going on, and I hope you can find a doctor who will take a more active role in helping you.

 

[sandradenise]

Thank you Hal,

The Doctor did not explain anything to me. I do know the fasciculations and fibrillatoins showed but not to sound stupid ... what is polyphasic units and giant units?


Sandra

 

[BrianD]

Sandra...

The doctor not explaining anything I'm sure has done nothing to calm you down. If this really has been going on for 2 years, and you are no closer to answers, then perhaps I might suggest that you try a different nuerologist. Or at leat get a copy of your records, and get an opinion from another neuro.

I also might suggest calling the Alabama ALS Association chapter... and ask if they can recommend a neuro in Mobile. Their phone number is (800) 664-1242

There are other conditions that can cause symptoms that you describe, so getting in touch with a neuro that specializes in the motor neuron areas would be quite helpful. It very well could be something treatable!

From my experience and research, only doing EMG on one leg is not typical... usually they do at least 3 limbs.

So I'm not trying to bash your current doctor, but he/she does not seem to be helping you out here based on what you have shared.

Brian

 

[hopingforcure]

I agree you need to see a neuro to help give you answers that are more concrete for you. Call the MDA or ALSA like someone already posted. I am saddened when we have members that do understand things they are diagnosed or undiagnosed with.

 

[Zaphoon]

The good thing is that the doctor agrees enough about something being wrong that he is willing to see you again in 3 months and he left the option open for you to come in sooner if you get to feeling worse.

My guess is this doc needs more time to figure things out. If the EMG wasn't conclusive enough, the least he could have done was to say so. My experience has been 3 months inbetween visits when things are shakey and 6 months when things are going good.

Zaphoon

 

[tmasters]

Sandra,

You need to get to the bottom of this. It's obviously not just making you nervous, but it's affecting the way you move and eat and live your life!

The neurologist (you ARE going to a neurologist, aren't you?) you're seeing is not communicating with you and that will probably not change. There's just no chemistry there. Go find another one. What can it hurt?

And bring somebody along with you next time you go to the doctor... somebody to help ask questions and take notes.

Good luck to you,
-Tom

 

[halfin]

Hi Sandra - I was kind of hoping someone else would chime in on the various EMG signals, I have only learned a little about them. What happens is if nerves die, other neighboring nerves will branch out at the end and take over the muscle fibers from the ones that died. This means that a surviving nerve cell is connecting to many more muscle fibers than usual, so all those fibers will fire more or less together, when the nerve does. If they all sync up then the EMG probe can sometimes pick that up and it produces an unusually large or "giant" signal. Or I think sometimes they can fire at slightly different times which produces a messy signal. Then the fact that nerves are dying and regrowing means that some of the nerve-muscle connections are new or in the process of forming, which produces other kinds of indications.

When you see an EMG report it is usually a computer printout with columns for the different kinds of signals, fibrillations and such, and then the rows are for the different muscles that were tested. So maybe your left biceps muscle had 10 fasciculations, 4 giant units, and 3 fibrillations, for example, while your right hamstring had none. If you can get a copy of your EMG report and post a summary here (usually most entries are zeros so you can skip those), some of the more experienced members can give an idea of what it might mean.

 

[hopingforcure]

Halfin,
Wow you are a quick learner, you explained it pretty spot on. Does your name(Halfin), have something to do with running? Always wondering were people get avitar and name ideas.

 

[sandradenise]

Thank you all for your help! You have helped me more than anyone so far. I went to school with My neurologist and I am thinking that he can not be objective or competely truthful to me. I am going to call the als 800 and see about another one here in Mobile.

My husband does not like talking about it. He understands and is very caring but we don't talk about this. Is that natural for spouses to react in that matter? He helps me walk and stand. He is loving.

I have not said anything to my children and don't plan to until I know exactly what is wrong. Is that the right thing to do? My sons should not have to worry needless.

Sandra

 

[Blackpool]

My reaction would be the same as you ,why worry them, at the same time they notice you are not feeling as well you didn't say how old they were, but answer with truthful and simple answers appropiate to there age. Everbody deals with things differently.

 

[sandradenise]

thank you so much, my sons are 35 and 32 married to two sweet girls. I have 3 grandkids . The oldest granddaughter is 11 and her sister is 4. My grandson will be 5 in Nov. The grandbabies don't understand why Nana can't play and run like I used too. I have tried to make new games up with them where they have to do most of the running and walking. It is so hard.

I am afraid if the kids knew I would not be able to have them like I do now. Just having them around me makes me happy. My family are my life.

If I only had some answers , I could go forward and make some plans and be able to tell them. We could then make plans for the future.

The last 2 days I cannot even walk. My left side is cramping and twitching. I am going to find another neuro this Monday and make an appointment. Thank you for the ALS number. I am calling them to get a referral here in Mobile. You all have giving me the courage to take control of me. It is not in my head. Well it is in my head but not my imagination I should have said.

Halfin , after I bought a book after you post and read it. You make a lot of sense and made it easier to understand. Whoooo!


Sandra

 

[halfin]

Hi Sandra - It's funny, I'm in a similar situation with my neurologist, I went to school with him, and knew him pretty well back in the day. In a way it's really nice, he'll squeeze us in for appointments, gave us his cell number and email. And he's very smart, he picked up on what my problem might be right away, got me referred to a specialist so I got my diagnosis pretty fast. But I saw him Wednesday, I've had some progression, and he looked so serious and worried as he was examining me. He was always a happy go lucky guy back in school and is generally very good natured. I'm sure it's hard for him to have someone like me, whom he knows personally, dealing with a disease like this. I don't want to be someone who brings people down.

As far as your kids, I too have grown children. Back before I was diagnosed but when I had some symptoms, I did try to keep them in the loop, but just generally. I didn't say anything about ALS or other specific diseases. I told them I was having these weird symptoms (which were much less severe than what you are dealing with), seeing doctors, getting some tests and so on. I said that there were a lot of things it might turn out to be, some serious and others not so much, and hopefully it would turn out OK. That was enough for that time. Even grown adults want to think of their parents as the strong healthy figures they knew as children. It's hard for them to accept a parent getting sick. So for me it worked best to break it gradually like that.

 

[sandradenise]

We do have a lot in common. Thank you for sharing it. I will let them know gradually like you said. Still not knowing myself is draining. I even have dreams (nightmares) about ALS. My uncle died with ALS back in 1996. I know what he went thru and don't want to put my family thru that.

He suffered for years before the dr diagnosed him. Jan of 96 he could not swallow or talk then he was diagnosed with Als and died that following July. My aunt said the doctors told him he had arthritis. I remember my mother's grandmother just lying completely still on her bed and was told when I was a child she just was old. I am afraid That she too had ALS and Now I have it.

I am not afraid of the disease but afraid of not being with my family. Afraid of being left out of everything just because I am ill. Afraid of having to ask for help and not getting help. Does any one else feel like that?

Sorry to be a drag, It is a beautiful day here in Mobile. Sunny and the temperature has dropped to around 85%. Pretty cool for us.

live well, love much, laugh often !


Sandra

 

[joelc]

You can still be with your family and don't have to be left out of everything. It is your choice. With the technology available to us today life can still be very enjoyable. Don't give up yet! Plan to live and move forward with that attitude. Enjoy each day and don't look to the future wondering what will happen.