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sukilou

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I'm new to the forum, and have been recently diagnosed with MND, probable ALS by my neuro. I'm being referred to the Providence ALS Center, Portland, Or, but my appt isn't until Nov 10. I'm 64, will be 65 in Dec, and am wondering about any correlation between age and rate of progression.

I have no bulbar symptoms at this time. My first awareness of something amiss was in Jan 06 when I began to stumble and trip. I thought it was part of the aging process and didn't think too much about it--I just started paying more attention to where I was stepping. After 1 1/2 years of balance problems and many falls, I went to my GP who referred me to a neuro, Jun 07. He noted hyper reflexes, gait problem, no weakness with resistance testing. He ordered blood tests for sed rate, muscle enzyme, B12, and MRIs on head and cervical spine. My brain MRI showed a very small (9mm) meningioma on my right frontal lobe which he said did not account for my symptoms, cervical MRI was normal, and to follow up in a year.

In May, 08, I had a serious fall which resulted in a Smith fracture of my left wrist, and required surgery with plate and screws to repair it. I started physical therapy for the rehab on my wrist, and my PT recommended that I return to my neuro, as my walking difficulties were progressing. I was using a cane to help with my balance. I decided to wait until my 1 year followup appt which was in Aug.

My neuro exam in Aug showed hyper reflexes in legs and arms, spasicity in legs, clinical weakness in right leg, right and left arms, atrophy in right foot muscles, gait abnormality. He ordered more MRIs of brain, cervical, thoracic and lumbar spines. My meningioma showed no change and the others were normal. He then performed a nerve conduction test and 3 hr. EMG. (He specializes in electromyography testing). The nerve conduction test was normal, and EMG showed abnormalities, positive waves, in right arm, hand, foot and leg, left arm and hand, paraspinal muscles. He tested my tongue in 2 places and that was clean. I don't have a written report as of yet.

He said that it would be irresponsible of him to diagnosed ALS without a second opinion, but was certain that I had a MND. I asked him if ALS was a "maybe" and he said "no, it was probable." And again, he said that he had ruled out perpheral neuropathy, myopathy, myleopathy, multifocal motor neuropathy, and that I needed to see an ALS specialist.

So here I am, waiting again, and wondering about progression. There have been a lot of changes in the last six mos, and I'm also wondering about the trauma of surgery and my age being factors in rate of progression. Any thoughts or advice is very much appreciated.

Sorry about the length of post--I wanted to give some background. Thank you for this forum and all for being here. Lonna
 

BethU

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Hi, Lonna ... I'm so sorry you have had to join this forum ... but glad you found us! You'll get a lot of good information and support.

I can't help much on the medical issues, just relate my own experiences. It is my understanding that your surgery probably had no effect on the rate of progression. My symptoms appeared after a surgery, too, and some people believe such traumas can aggravate a latent case of ALS, but I think that is mostly an urban legend. There is no proof that I know of that injuries or surgery affect the appearance of symptoms or have any effect on the rate of progression.

As to age, I'm now almost 73 (eek!). My symptoms started 2 1/2 years ago, and although I can see the progression (I started with bulbar, and it's now slowly headed into my arms and hands), it has so far been slow. Every case of motor neuron disease is unique ... someone on this forum calls us "snowflakes," because every case is different ...

But in my experience and from what I've read, neither the surgery nor your age will affect the progression.

Sending you prayers and good vibes,
BethU
 

Al

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Hi Lonna. Welcome. As Beth says, progression is a duck shoot. You can't really say how it will hit each person. I've known people in their 40's that were gone in a year and others still living 10 years later. There are lots here your age that are slow progressers. A lot hit plateau's where they stop progression for a while. No one really knows how or why. It just happens to some. Hopefully you'll plateau soon.

AL.
 

rose

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sukilou, welcome to the forum :smile: Your post wasn't long at all. I hope you get some more answers at your next appointment. I too have a diagnosis of "probable MND" however mine started with the bulbar area first.

Beth.... about this upcoming birthday...... just wondering if yours is near mine? (I boldly put the date on my user information page) we can always do a little cyber partying. Not really sure how to cyber party, but I'm sure we can figure it out! :cool:
 

wright

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Hello Lonna

The history and progression of your symptoms indicates that you are progressing relatively slowly. Take solace in that. Welcome to our family, by the way. Take care.
 

BethU

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Hi, Rose ... I noted that you are a Scorpio, one of my favorite signs (brainy, passionate!) My birthday's December 10. Maybe we can pick a mid-point in between and party hearty online. :)
 

patricia1

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Hi Rose
Alot has to do with your attitude
Be positive
Never give in
Never give up
Fight Fight Fight
Everyday will be a new challenge and you will get through it:smile:

Keep the faith

Pat
 

rose

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Patricia & Beth

Thank you Pat, today has been harder than most.

Beth, yes we birthday girls will find a way to party , perhaps even a little table dancing :cool:

Lonna, sorry, didn't intend to hijack your post at all.
 

sukilou

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Thanks all for the replies to my post. And Rose, can I party too--my birthday is Dec. 7?:smile: Lonna
 

Al

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Will there be any pole dancing at this party? Please post pictures. LOL.

AL.
 

BethU

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Lonna ... Absolutely ... I'm sure Rose will agree ... there's plenty of room on the table !

:)
 

BethU

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I don't know, Al. I'm Welsh, Irish, English and French. Rose, Lonna ? Any Poles out there? Gotta keep our moderator happy.
 

patricia1

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I think he meant Flag poles!:mrgreen:
 

hopealive

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Thinking of you Lonna, and just wanted you to know that Dr. Goslin is wonderful at Providence in Portland. This is where my mother went for her second diagnosed.

Love,
Holly
 

rose

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Wow, I've missed a lot! Lonna, absolutely we will have a group birthday party....

Al, lets clarify: is this "Pole" dancing, or "pole" dancing ?

Maybe I've missed one of my callings... actually, recently I was bemoaning the fact that my voice will no longer allow me the chance of becoming a lounge singer. I really do think I could carry off the "draped across the piano" routine. But Don told me (I'd like to say in the most gentle way possible ) that even before I lost my voice, singing in public was never really an option for me :cool:
 
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