stiffness

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rockwitz

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Hello: My mom and my uncle both passed from ALS. I am 76 years old. 25 months ago my legs felt heavy and I started the doctor chase I have had 3 emg tests which have been negative.
However in the last 2-3 months stiffness in my back, shoulder and neck have increased. I go to UCI Health ALS and Neuromuscular located in Orange County. My next appt. is 5/6. I am still active and today I swam 800 yards. I swam in college. I can get around but I am content to read and tv surf

I use valium to take off the edge. I try to do the "one day at a time" but I think what the hell is going to happen next. I don't know how my mom fought to the very end. I am not sure I can go the same route.

I realize diagnosis for als takes awhile but after 2 years.!! Scan-110604-0003.jpg (Back in the day. 53 years)

TY for reading, Dennis
 

Nikki J

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I moved your post as it appears you do not have a diagnosis at this time

have you had testing for the known FALS mutations? What does your clinical exam show?
 

rockwitz

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Point taken. No diagnosis as of yet. Each time I show up the neurologist goes through a protocol for strength in the forearms and legs. Walking on your toes and heels. I pass these easily. This however does not account for the stiffness in my torso or the problem I have with swallowing.

Stiffness has increased more over the last 3 months. Will see neurologist 5/6

No testing for FALS as of yet. As I mentioned 3 emg test were negative. However this does not address the stiffness.

On another note I had a test for swallowing a year ago and was diagnosed as mild to moderate.
TY for replying. Nice to address my ?problem? Dennis
 

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Nikki J

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Swallowing mild to moderate what?

stiffness when related to ALS is either due to disuse which is obviously not you or spasticity which your neurologist would be able to detect on clinical exam. It isn’t joint stiffness and not exactly what most people mean by stiffness but again your doctor can detect it Spasticity is an upper motor neuron sign and as you say would not show on emg.

I would discuss genetic testing with your neurologist. It won’t diagnose you if you do have an identified mutation and it won’t rule ALS out if you do not but it would be another data point. As you may know at this point there are still about 30 percent of clear FALS that do not yet have an identified mutation. 70 percent do though.

let us know how your appointment goes
 

rockwitz

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You are so nice to reply. It helps clear my mind that a live human being is listening and helping.

TY so much
 

rockwitz

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The swallowing is for any bulbar symptoms. You are swallowing different viscosities of fluids do see how you are doing. You start with water and then slowly increase the thickness of the fluid. It is all translated by xray to get a final result. Dennis
 

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Nikki J

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I know what a swallow study is but the result must have said something more than mild to moderate. Those are describing the degree of some abnormality. Not all swallow issues point to ALS. You don’t have to say if you don’t want to
 

rockwitz

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TY That is all I know
 

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rockwitz

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I had my appt. With Dr. Korb at UCI Health. Explained my increase in stiffness and swallowing. She did a quick protocol to check my strength and reflexes which were fine. Said stiffness should be addressed with my primary for arthritis.

It was inferred that my age (76) is just a part of my ailments. There was no need for any appts. in that I have been with her for 18 months and I do not have als. So the journey continues. No need to see what goes on. Doctor hunting is counter productive. UCI Health is considered to be one of the gold standards for ALS. and it would be my 2nd opinion over 18 months.

TY for your help
 

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Bestfriends14

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Great news! Congrats and all the best to you.

Take good care.
 
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