Wyoste's thread

[wyoste]

Hi I'm new to this thread. Not too sure of the whole process. Anyway I'm 75 and have had weakness that started about 5 years ago in right leg. I have have had a full check out at the Leahy Clinic in Massachusetts 3 years ago. ALS wasn't confirmed but not eliminated either. I haven't gone back for anymore tests. Weakness is progressing moderately. I can still walk my dog with aid of two old ski poles going a total of 1/8 of a mile. I have weakness throughout my whole body. Left hand and wrist can't hold a cup of coffee. Right hand OK. I can't climb one step without pulling myself up with right arm. I fall now and then. My plan is to wait until I'm sure it's ALS before going back to doctors for diagnosis. Thanks for any suggestions.
Steve in rural Maine coast.

 

[ShiftKicker]

Mod note: Moved post to own thread.

Welcome, wyoste. Sorry you find yourself here. I've moved your post to your own thread. It sounds like your situation is quite different from most of the people who come here seeking answers.

 

[KarenNWendyn]

I can’t tell you whether or not you have ALS, but I do recommend you see a neurologist given your progression of symptoms and new involvement in left hand and wrist. Something is going on, hopefully benign, but you owe it to yourself to find out what it is because it might be treatable.

 

[GregK]

The first rule is to not hijack someone else's thread!
The second rule is that undiagnosed visitors have to stay solely in their own thread.

And this one is now yours!
Plz stay in it.

 

[GregK]

Wow! Mod collision! ;-)

 

[KimT]

If I were you, I'd go to a neurologist and find out what is wrong.

 

[wyoste]

Thanks Kim,
I've been to neurologist in Maine. She referred me to Leahy Clinic in Massachusetts. Spent the day at Clinic and had all the tests, saw 2 different neurologists etc. Didn't confirm or exclude ALS. That was about 3 years ago.
I guess I'm at the point where I don't want to go back unless I'm sure I will get a diagnosis. I have no fear of getting a positive diagnosis because I have had a great life and 75 is pretty good age.
But I would still like to get a diagnosis so I can make plans.
I've had all the typical weakness but no significant twitching. Also the progression of weakness doesn't seem that fast. In other words I'm still here and walking with my poles. There are times when my voice is weak and I am very weary. Also at times I feel faint. When driving I have had to pull over and rest because I am concerned I could pass out. FWIW I pull over at the very first indication of exhaustion. I would never risk causing a accident and hurting someone else. Is that type of exhAustin typical?

 

[KimT]

I think you might have something other than ALS going on. I'd give it another shot and see a neurologist. Three years is a long time between visits. I bet they didn't rule out some of the things that can be causing your symptoms.

The pulling over from exhaustion does not sound like the exhaustion I experience. When I'm driving, I'm very alert. If I drive too long, my neck hurts but that has been going on for years as a result of an auto accident.

I just get tired if I try to cram too much into the day.

It sounds like you have a lot of function left. If it is ALS, you are having an extremely slow progression. That leads me to think it's something else. Maybe more than one thing.

 

[Atsugi]

Wyoste, I don't see much reason to think about ALS. The weakness you describe is very widespread, and I also note a bit of exhaustion in your posts.

In the beginning onset of ALS, when we say "weakness" we mean very specific, targeted muscle failure. For instance, you whole body is AOK, you're doing fine, but one day there's a specific muscle in your hand that barely moves. One muscle doesn't respond. That's our kind of weakness. It doesn't feel weak, it doesn't feel exhausted, it doesn't feel numb or funny--it just doesn't move when you tell it to.

As the disease progresses, more muscle--usually in serial order--will be weakened to failure. So several fingers won't work. Then later, the whole forearm just lays limp, flaccid, paralyzed. In most cases, the rest of the body feels works just fine. Then one day, a toe won't respond, then that foot goes, etc.

Your posts seem to say you have a wide-body fatigue, exhaustion type of overall weakness. That's something else.

 

[lgelb]

Agree that whatever you have, likely not ALS, is slow-progressing and possibly treatable, Steve. 3y was a long time ago. I would get another eval so as you say, you can plan, even possibly improve.


Best,
Laurie

 

[wyoste]

Thanks all for your input.
One last post of my history.
I was always very strong and athletic. In retirement, bike riding, cross country skiing golfing. Even 5 lobster traps hauled by hand on my small boat. Never in hospital with illness.
Weakness started in legs. GP ordered muscle biopsy because of a blood ensym indication. Biopsy benign. Had spinal tap ordered by neurologist, nothing abnormal. Like I posted previously spent day at Leahy Clinic neurological department with no decision.
I use time when I got my dog as reference. First night we brought him home from rescue caravan from Arkansas he wouldn't go upstairs to bedroom. I picked him up and carried him up to 2nd floor. Now he runs upstairs lol. He weighed about 40 pounds then, 70 now.
That will be 6 years ago in October. Now I can't take one step up without pulling myself with my arm. I still go to my GP for regular check ups. He leaves it up to me whether or not to take another shot at neurologist. Right now I feel they won't be definitive with diagnosis so I wait.
Also my uncle died from ALS about 30 years ago.
Right now taking a shower and getting dressed is exhausting.

 

[wyoste]

Oops, I'm still talking lol.
A little more on my uncle that died of ALS. He was a old time wooden boat builder. A terrific craftsman. Actually more of a artist imo.
Anyway he worked a lot with lead to fashion the keels for the sailboats. It takes tons of smelting lead to form a keel. Coincidentally I am a retired plumber and worked extensively with lead. Pouring joints for CI soil pipe etc.
My speculation is my family may have a genetic predisposition for ALS which is triggered by heavy long term exposure to lead?
Anyone else work with lead?

 

[wyoste]

Atsugi thanks for your help.
But I will say with me it isn't just "feeling weak" it's definitely very real weakness. And it is much worse with some muscles than others. Originally my upper body wasn't affected but now arms shoulders and neck are quite weak. Left arm and hand much more than right.

 

[Atsugi]

Yes, WY. We're reading you loud and clear. Work with your doctors. We're seeing widespread weakness in your posts, and ALS starts out highly focused.

You write of tiredness and exhaustion and pulling over on the road. This is not like new onset ALS.

As for lead, who knows? There have been many candidates for "I was exposed to ___" Research continues.

 

[wyoste]

Thanks Atsugi, my symptoms were localized to right leg and now most of my muscles are affected. I am working with my PCP. He is leaving decisions for future up to me which I appreciate.
I guess imo I did all the tests about 3 years ago including muscle biopsy and spinal tap without conclusive diagnosis. My weakness has progressed as I have previously described.
At some point I will go for another visit with neurologist but I also except a diagnosis won't change my future. For now I'm still walking with my old ski poles although falling on occasion. Probably my stubbornness to keep walking isn't wise but I can't help it because that's who I am.
Anyhow I'm here to just chew the fat with others that understand how I feel.
You are in Orlando, that's a vacation mecca just like near me with Bar Harbor Me. Although Bar Harbor closes up for the winter and workers head for Orlando LOL. I think of you guys down there when in January we are under blizzard conditions. You can think of Bar Harbor when it's 95 there and 75 here.
Anyway, stay in touch and I will let you now how I'm doing and if you would like to share I'm a good listener.
Wyoste in Maine fighting black flies for the next month or so.