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Tom S

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May 29, 2008
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PALS
Diagnosis
05/2008
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US
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IL
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Geneva
I'm a newbie, so please excuse any faux pas or breaches of ettiquite. I noticed something wrong with my muscles & reflexes about 18 months ago. Internest dismissed my concerns. Cramps and twitches got very much worse and had constant pain and weakness in forearms. Kept complaining. Saw neurologist for EMG tests last Aug. Said I was tired. Went back for 2nd round in Dec. Neuro said not enough to worry about, but you don't have ALS. Weaned myself off Baclofen for Christmas. Told everyone it wasn't serious. Assigned to physical therapy. PT said "you've got a LOT going on and none of it's good". After 6 wks was weaker than at start. Neck MRI. Some sinal cord compression but not enough to explain symptoms. Back to neuro. "somthing's going on." You want me to do another EMG? No - I want someone who can tell me what's going on.
 

fmarino

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PALS
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nj
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new brunswick
Hello Tom

I just read your other post and you said you were diagnosed 4 weeks ago? Am I mistaken?
More questions for you: was your EMG a thorough EMG? What did the neuro mean when he said "something is going on?" Did he tell you? Do you have atrophy? What kind of pain are you having in your forearm?
If I was mistaken and you haven't been diagnosed, and you are unhappy with your neuro, then I would get a third opinion. It seems that some on here have done that and have finally gotten answers.
 

Tom S

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Joined
May 29, 2008
Messages
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Reason
PALS
Diagnosis
05/2008
Country
US
State
IL
City
Geneva
More info

Was diagnosed with MND 5/1/08. Exact variant is TBD, seems like PMA. The EMG's took, as I recall, an hour each. Both arms & legs. Neuro noticed significant decline in Feb after the PT. Now atrophy in both hands, arms and right side of neck is pronounced. Not so much in legs - hence the weight loss. Burning pain in both forearms & neck.

Am finally seeing a very good Dr., but there is not much that can be done.
 

Tom S

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Joined
May 29, 2008
Messages
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Reason
PALS
Diagnosis
05/2008
Country
US
State
IL
City
Geneva
Balance of 1st post - something got lost

More tests & biopsy from a REAL DOCTOR result in DX of MND 5/1/08. I've lost 30# since New Year's - 25# was muscle. Balance is poor, arm strength is about gone and legs are going. Have found braces for carpal tunnel help with arms. Don't know what to do about neck. I've tried to talk about the future with my wife. She will not talk about it. She wants to go to Italy this fall. Given the course of things, I don't see that happening. Should I humor her? I've got the last day planned out & rehearsed. This is so not easy. The prospect of being reduced to a purely existential existence is challenging. How hard to we push our condition on others? Do we not owe them something other than months of sacrifice followed by death?

What do we owe ourselves? I try to set achievable goals every day that require some effort beyond myself - something that exists, if only briefly outside myself. If I can do that, it's a good day regardless of anything else.

Thanks in advance for your input.
 

fmarino

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Messages
42
Reason
PALS
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State
nj
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So sorry to hear about your diagnosis, Tom. We are all here for you.

I'm not sure I have ever heard of TBD. What does it stand for? Does that variant cause the burning pain? Is the burning pain constant? Did your EMG's show denervation from the beginning? It sounds like your diagnosis went from "no MND" to "you have MND" fairly quickly. Is that because you went to another neuro and he/she diagnosed you while the others couldn't?

Take care and post when you need help.
 

Tom S

Member
Joined
May 29, 2008
Messages
12
Reason
PALS
Diagnosis
05/2008
Country
US
State
IL
City
Geneva
TBD = to be determined. Pain is pretty constant. I take 4-5 naproxen 220 mg) when it gets bad. Dr. says anything potent enough to knock the pain down will supress breathing. 1st EMG was borderline normal. 2nd Dr. is very good, but he needed a biopsy to confirm.
 

Robert Mathis

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Joined
May 11, 2008
Messages
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Reason
PALS
Diagnosis
09/2002
Country
US
State
TX
City
Burleson
Hang in there

Tom
I was diagnosed with ALS in the fall of 2002. My symptoms were weakness of the hands, and the twitches you are experiencing. Since then, my prgression has been slow but steady. I have recently been fitted for leg braces and have purchased a wheelchair. I have fallen several times but haven't broken anything. I use a Bipap machine at night and this is very helpful.

to keep going, I have found it very helpful to make plans for the future and to work toward fulfilling those plans. ALS is a terrifying disease if you spend too much time thinking about it. So I focus on the things that I can do and try to be as positive as I can.

I have a number of friends who show support and are great at encouraging me. My wife is a great help to me so do whatever you can to get yours on-board. You are going to need her and she may find that this is a way to develop something in her life that she has been missing.

Also, I have found that my faith-walk has grown immeasurably. So I would encourage you in that regard too. Sometimes when I think I'm about all used up, prayer helps me keep going.

So I have found that good plans, good friends, family support, and the good Lord sustain me in this struggle. I hope you find that to be the case too.

I hope I can stay in touch with you through this.
Bob Mathis
 

Tom S

Member
Joined
May 29, 2008
Messages
12
Reason
PALS
Diagnosis
05/2008
Country
US
State
IL
City
Geneva
Bob,

Thanks so much for encouraging words. Let's stay in touch. 6 years - I can't imagine half that. Did there come a time- an exact day - when you couldn't do some specific physical thing? Could you predict it in advance? Sort of '... by Friday at this rate, I won't be able to ...'?

Thanks again, I need to get handier with the forum technology.

Tom
 

fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
337
Reason
CALS
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
Hello Tom,
Welcome to the bewildering world of NMD! I'm so sorry about your diagnosis, noticeable decline, and the constant pain. The pain must be especially hard to deal with and certainly contemplating being reduced to a purely existential state is the biggest challenge of all.
Amazingly though, the cruelties, challenges, robbing of functionality, etc. that this disease throws at PALS has the potential to teach both PALS and CALS to enter a whole new dimension in their lives which offers a much more reflective way of daily living devoid of some of the superficialities that keep us captive and blind us to what's really important.
I hope your wife can soon come to terms with your illness and be there with you in the truest sense. She sounds as if she's fighting your illness as much as she can which will ultimately make it so much more difficult for her. You're really going to need her and I hope she soon can enter the world you're living in now and be there for you.
I thought that the words written above by Robert Mathis were so helpful and inspiring where he said "to keep going, I have found it very helpful to make plans for the future and to work toward fulfilling those plans. ALS is a terrifying disease if you spend too much time thinking about it. So I focus on the things that I can do and try to be as positive as I can." (Thanks Robert!) I hope you can heed them. You sound as if you are able to have a similar outlook when you say "I try to set achievable goals every day that require some effort beyond myself - something that exists, if only briefly outside myself. If I can do that, it's a good day regardless of anything else."
My PALS husband is really experiencing some significant losses now (speech, walking ability, swallowing ability) which are so difficult to come to terms with. I would hope he could heed those words too.
All the best to you and be sure and keep participating in this forum. So many are travelling this journey right now and we can all keep in touch and help each other through our daily struggle.
Peace,
Jane
 
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