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robc

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I've found very little information on Upper Motor Neuron onset ALS. Did anyone here have UMN onset? At this point I have definite upper motor neuron involvement plus fasiculations & lower motor neuron indicators on my muscle biopsy (fiber type grouping, atrophy, past dennervation/reinnervation), but so far basically normal EMGs.

I'm would love to hear from someone who has experience with or some information on upper motor neuron onset ALS or upper motor neuron predominant ALS. I understand that UMN predominant ALS usually has a slower onset and progression than Lower Motor Neuron onset ALS, but haven't been able to find any info that quantifies this.

Thanks!

-Rob

(I'm 35 with spasticity, fasiculations, cramps, fatigue. I have lost muscle mass but unsure if it is atrophy due to reduced use or neuro atrophy at this point).
 

bdyle

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mississippi
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Hey Rob, I have Upper Motor Neuron ALS. Dr. Stanley Appell in Houston told me it is usually slower progressing. I found some good info on it, let me go back thru all my stuff and find it and I will get back with you.
 

Big Mike

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I too have been diagnosed with upper motor neuron predominant als. My ALS specialist told me that it is moving slowly. I hope she is right.
 

Felicia38

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CALS
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I would like to know more about the uppor motor neuron als, my husband's problems all started in his left arm with pain like pins and needles and then he couldn't lift his arm out or up. Right now Dr. Glass suspects Peripheral Neropothy Vasculitis and we go back to Emory Thursday and Friday for the muscle and nerve biopsy, but Dr. Glass is not ruling out ALS yet. He said we need the biopsy to tell more.
I hope Dr. Glass is right and its PNV instead of ALS.
 

hopingforcure

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Hi, when we refer to Upper Motor Neuron dominant ALS, we usually are implying to people who have more of a stiffness, clonus, brisk-reflexes, spastic, kind of presentation, those are usually people who have very few ot the lower motor neuron problems like atrophy, severe weakness, and such. Some doc's do not even mention UMN ALS, but many of us believe it should be another classification that is used more often. Some people who first have PLS(UMN problems), later turn to a more classic form of als,and they often then call this UMN dominant. Hope that helped explain things a little better. Good luck at the appt. we will be sending good thoughts your way.
 

olly

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hi, i have mainly umn involvement but a few years ago they found i had hypotonia in my left lower leg.
over a year ago i have slowly developed atrophy in the left foot /ankle and the lower leg is slightly thinner.
i have discussed at my last appointment about having a emg,if its normal then the atrophy is probably disuse but that does not explain the hypotonia that would show up on the emg.
i have also some info on file on umn dominant als.
as hoping said this title is usually recognised in clinical trials and not as a diagnosed.
 

Felicia38

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Thanks Hoping! I appreciate your help and yes it did answer my question.
 

Carolvh9

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I was diagnosed with ALS on March 30, 2009. They didn't say it was just upper motor neurons that were involved, but an EMG they only found involvement with my legs and a little in my back. Nothing with swallowing, breathing, etc. The 1st symptom was last July 2008 with right toe cramps at night. Since then my toes curl under. Neurologist noticed excessive leg reflexes in Oct. Since Oct. I've had 4 MRIs, 2 nerve conduction tests and one EMG. Now I have trouble walking but can climb stairs with no problem. I'm unwilling to wait for it to suffocate me. My grandmother died of bulbar ALS and I have been horrified of ALS for decades since seeing what she went through. Does anybody else feel the same way? My daughter is a lawyer in Oregon. She says I can come live with her when I can't walk anymore and she'll help me go kaput. I don't want to live in a wheelchair with a respirator, feeding tube and a voice synthesizer. Am I wrong?
 

Carolvh9

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And when they say ALS kills you in 3-5 years are they counting from the date of diagnosis, or from the 1st symptom? Any guesses?
Thanks, Carol
 

Danijela

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Hi Carol,

sorry to hear about your diagnosis. EMG test uncover only lower motor neuro involvement while upper motor neuron involvement is diagnosed through physical examination (reflexes are usually brisk, there are Babinski and Hoffman signs present etc.).

As for 3-5 years (or even 2-5 years) scenario - in my reading I have come across both, that this means from the onset of the symptoms and from the diagnosis. However, it is quite futile to think in terms of numbers and averages as motor neuron disease affects people in different ways and progresses at different speeds. I hope that as you adjust to living with your diagnosis you begin to keep you options open as to what kind of future (or an ending) you want. Wishing you all the best, Danijela
 

Zaphoon

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Carol,

There are many people on this forum that have passed the 5 year marker and a few that did not make it through the first year after being diagnosed. As Danijela pointed out, ALS progresses in a wide variety of patterns, fast and slow. The thing to do is to stay ahead of the disease by anticipating needs and avoiding and reducing stress as much as possible.

With today's technology, it is possible to live a long time with ALS. Live life in the moment and enjoy the good company of today. The good people on this forum have been a big, big help to me!

Zaphoon
 

joelc

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Carol, I am living a great life with all the things you said you would not do. You can click on my name and then select search for other posts, you can read how my life has been since getting all of the items you mentioned.
 

hopingforcure

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I was thinking about Joel the entire time I was reading your post's Carol. Please remember all the advances we have to make your life worth living. I think if you listen to Joel long enough you will feel the way I do, life is worth living, he has given so many of us a different perspective.. Please stay around and maybe things will not seem so bad. Look everyday you live is a step closer to a cure...
 

BethU

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Carol ... I'm so sorry for your diagnosed. I hope you will find the support and information you need on this forum.

I'm sure seeing your grandmother suffer decades ago must have been very difficult. Fortunately, the care of ALS patients and management of symptoms has progressed a lot since then. A LOT.

There are PALS on this forum who have lived fullfilling lives for many, many years after diagnosis. When I was in limboland before my diagnosed, I used to joke to my speech therapist that if I was diagnosed with ALS, I was going to go out and buy a fifth of Jack Daniels and a carton of Camels and whatever else I would need to end it right there.

Well, a year ago, I got the diagnosed, and, strangely, I'm still here. What I have found with bulbar ALS is that I am still me, my husband and family are still themselves, we are all together and I am still able to do the things I care about most. Work (in my case painting and writing) has always been my greatest satisfaction outside of marriage and family, and fortunately I am still able to do that (although it takes some adjusting).

ALS is a huge challenge. Working around the disabilities it creates takes determination and lots of help and support. My best advice is to give it time. Get over the shock of the diagnosis. We all bounce off the walls for the first weeks after getting the news. Bulbar symptoms are way outside your radar right now, probably years down the road. Deal with what's on your plate right now, and don't worry about the future. It is probably much brighter than you can even imagine right now.

I wish you all the best. Hang in there.
 

Carolvh9

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MD
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Thanks BethU and Joel, but I don't have a family that I live with. I live alone with a dog and 3 cats. My sister is a big help but even she is 100 miles away. Once I can't walk, I can't live in this house (that I moved into 10 months ago!). It has 3 levels. And I don't want to be in a wheelchair anyway. My shrink just gave me 15 Ambiens and I have a little stockpile of trazadones, ativans, xanax and valium. I don't feel as helpless and trapped anymore. I saw a young man on PBS about a year ago who had ALS and a wife and 2 kids. He was an architect. He got a portable respirator and he was good to go. Then one night they had a power failure and he suffocated right next to his wife.
I'm getting into Johns Hopkins' ALS Clinic next week. I've got to get a good timetable so I can make some plans. Even a matter of months is ok with me.
Thanks again,
Carol
 
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