This is All New to Me

[Enough Already]

I'm 76 years, is that a little late in life for ALS? My left leg "tingles" much of the time. I have to dance because I drop knives when I try to fix meals. I can't walk a straight line. My left leg seems to do its own thing by not always responding to what I want it to do. My left leg causes me to walk into walls or cut corners to soon. My left hand gets spasms and makes typing out messages difficult on some days so, I give up doing emails. I stood up from the couch today only to fall back down to my left because my left leg failed to work. Two months ago, I was diagnosed with ALS. I get the electrical part of the test in December, sooner if they get a cancellation. So, here I am. Does any of this sound familiar to anyone? I sure would like a response. BTW there are other health issues.
Thank you for taking the time to read my post.

 

[lgelb]

I'm sorry, are you saying you were diagnosed without having had an EMG? Can you share where and by whom that diagnosis was made?

A second opinion is always advised and would be even more so from what you describe. 76 is not too old for ALS but being sure of the diagnosis is important at any age, of course.

 

[Enough Already]

First, thank you for reading and responding to my post. I am sorry. I did not make it clear enough. My first visit was with my neurologist for my epilepsy which I have been seeing for fifteen years. We discussed my new symptoms and was referred to a neurologist and had my first EMG. I get another study in December. My very first EMG for these symptoms was nine months ago. I was having shaking, spasms and problems keeping my weight steady. Too often I would drop four/five pounds in a week and then I had trouble gaining my weight back. I hope this helps make it clearer. Thank you

 

[Nikki J]

I am sorry you find yourself here. I am confused though. Why are you having another emg? Usually once als is diagnosed there is no need for another. Was yours abnormal but not diagnostic? Or did they diagnose you with upper motor neuron disease ( provisional PLS)? If so repeating would make sense.

Is the diagnosing neurologist an ALS specialist? Even if they are as Laurie says a second opinion with another als specialist is a good idea. You want to make absolutely sure

 

[Enough Already]

The diagnosing neurologist is an ALS specialist and the reason the second test is: for a second opinion and because I have epilepsy, I take three anti-seizure meds daily and have a Vagas Nerve Stimulator, all for seizure control. I have epilepsy because of brain injury as an infant. More information about my epilepsy would be a long read with a long history. Happily, I have had a good life.

It's time to get my wife ready for bed. She has doctor visits in the AM.
Good night all
Thank you for your replies.

 

[Nikki J]

Oh I see ,your second opinion doctor wants their own emg? That happens sometimes. I am sorry you have to wait.

If your leg problems are getting worse you need to guard against falls which can be very dangerous for us. Do you have an afo ( brace) or a rollator? It is good to stay a couple of steps ahead of what you need today

You mention shaking and spasms. Did your neurologist find upper motor neuron spasticity and clonus. There is medicine that can help if so though maybe your other meds would limit what you can take.

Did they discover why you are losing weight? In als there are two main causes - decreased intake due to poor swallow and or upper body weakness that limits self feeding - or increased need due either to respiratory issues ( working to breathe burns extra calories) or increased metabolism that happens to a subset of pals. You said you were working to regain which is good. Our neurologists want us to maintain weight. If you are struggling concentrated calories are good

 

[Enough Already]

Nikki, thanks for all your help. The help matters a lot.
First my nest neuro appt. has been moved up to Oct. 11th. I have been told if I feel I am getting worse go to the ER and give them the name of my Neuro, the Cardiologist and the Epileptologist. The ER will be happy as, you know what!
I do guard against falls, using a cane. Not a walker, embarrassed, too much pride, foolish I know. Neuro did find spasticity, no meds given due to meds I currently take. I'll know more on October 11th.
Losing weight is twofold. Making meals takes energy. By the end of the day and caring for my wife I sort of run low on energy. Getting some help is a challenge. My VNS {VAGAS NERVE STIMULATOR} causes me to be short of breath, every two minutes. Swallowing must be timed, leaving me short of breath also. By the time I get through the above, no energy and loss of appetite. I do use Ensure, not exactly the tastiest thing in the world but it helps. I really like cheeseburgers, fries and malts but let's face it, not a smart move at all.
With ALS self-typing these posts takes so much time. Even spell check can't figure out what I'm trying to do!!
Nikki, keep up the great posts. You are appreciated.

 

[Nikki J]

If you are safe with the cane that is fine. But if you are not remember it is a lot more embarrassing ( and painful) to fall especially if you need help getting back up

Things are extra hard for you it sounds like given your other medical history. It sounds like your wife is disabled as you mention caring for her as well. You have a lot of challenges

I think ensure is disgusting. I found glucerna tolerable ( barely) I am not diabetic but it was recommended. Some people buy Kate Fsrms I know. Smoothies you make yourself can be great but they do take time and energy. Burgers etc may not be the optimum choice but they are calorie dense at least and maintaining weight is your priority

 

[lgelb]

With the VNS and need for timed swallowing, I would ask about a feeding tube at your appointment on the 11th. Getting that going will help ensure (no pun intended) that you maintain acceptable nutrition, which you need for general reasons, because epilepsy sucks it up, ALS sucks it up in several new ways, and to care for your wife. You don't have to use it full-time; you can still eat as long as you are able.

I would also look into supports available in Pierce County for the two of you.

 

[Enough Already]

Hello everyone. Is fatigue an issue anyone? I need at least two naps each day, 90 minutes to 120 minutes each day.

 

[tmflanagan123]

Yes, my boyfriend has to nap frequently. Doesn’t sleep well at night. Fatigue is never ending.

 

[Nikki J]

I think a subset of PALS experience significant fatigue. I get tired but not sleepy though. You are having issues with keeping weight on plus you have other medical issues plus ALS so your body is under a lot of strain. Are you also sleeping all night?

 

[wlhemler]

So sorry for you. However, I too have been living like this for over a year. Always get a second opinion. I was first misdiagnosed with necrotizing myositis only to get 2nd opinion with further testing confirmed ALS.

 

[Enough Already]

Sadly, I don't get to sleep all night. Every four hours, every day, I catharize my wife's bladder.. She has a neo-bladder. That type of bladder she has was made from a section of her small intestine after her natural bladder became hemorrhagic from chemo for breast cancer. That is another long sad story.
I get my second opinion for ALS on Oct. Tuesday, 22nd.
Does anyone have issues with not being able to stay warm enough? Legs are usually cold feeling, and left hand always feels cold to the touch. I wear a down vest most of the day.
Again, thank you for reading my post.

 

[Nikki J]

Good luck Tuesday

Re cold I am. I think it is common due to decreased mobility, muscle loss, and overall weight loss