Oh! So other people have this stupid disease too?

[tomward]

What a PITA this thing is.Slowed me down alright.PMA that is.Its slow but its real.Left forearm looks like a ten year old girl and thats on a 6'1",235lb Irish Catholic former U.S.Marine.Glad I didn't get that tatoo now 37 years ago.Cramps,fasiculations and atrophy over the last few years.Evidence of ulnar nerve damage too as the little and ring finger on the left hand will not snug up against the middle finger no matter how hard I try.Not a big deal in itself but it does keep those two last fingers from assisting in an adequate grip on things.The atrophy has progressed across my shoulder and into the right side.Now the right arm is beginning to show signs of atrophy as well.Back in my day I could squeeze the life out of you or like a circus strong man hold you over my head and toss you at will.Now that ballistic strength is gone.I find ways to improvise that most people would not even notice.But I do.My wife does.Has made for some poingant moments of intimacy as my upper body strength is about 70% diminished and I'll let your imagination take it from there!
Since this is a muscular disease do you think my recent backaches which have no apparent cause or trigger may be due to the muscles in my back being involved?
Does PMA work that way? Will it affect the back muscles?
I'm also getting some uncontrollabe twitching in my eyelids.Some? How about a ridiculous amount.
What about that?
What does everyone think?

 

[Al]

Hi Tom. Welcome but sorry you had to come looking for us. I have ALS so can't say too much about PMA but seems that the lower back muscles have to work harder holding everything up with not much help from the upper back and shoulders. There is also the possibility that you've done something to your lower back as well. We and the docs sometimes just brush everything aside as being related to the big diagnosis. Probably wouldn't hurt to have it looked at.

AL.

 

[oldcarmama]

Hi - I was recently diagnosed with PMA after having been told I had ALS. Went through three weeks of hysterics and finally found a wonderful neurologist who knew what he was talking about. I've been experiencing ridiculous muscle weakness in my right hand and left leg for about 5 months now. I, too, get the muscle twitches in my eyes and the fingers of my right hand, which drive me nuts. It's hard for me to walk for long periods, and sometimes my back feels achy. This is making me miserable because I can't do the cardio classes at the gym that I love so much. Up to now I was extremely active. Now I barely have the energy to get through a day at work and get myself home. My doctor prescribed Rilutek which is what they prescribe for ALS. We have no idea how this will help, but it can't hurt to try. He also suggested that since I do have access to the gym I should try to do just the exercise bikes and work with some light weights to maintain muscle strength in my arms. Additionally, a daily multi-vitamin along with 800 mg. of Vitamin E was suggested for all-around nutritional help. The vitamin E, along with being a great anti-oxidant, is very helpful for the muscle cramps, which I experience often. I refuse to let this get the better of me, so I go through my day at work, come home, take care of our cats, clean the house, cook, and do whatever I can to make my life as "normal" as it can be under the circumstances. I figure as long as I can still drive, go to work, and take care of myself, I'm one step ahead of the game. Please, as depressing as this can be, don't let it get the better of you. My husband is being very supportive, even though this is all new to him. I'm sure your wife understands that your physical limitations are very real. I hope you can maintain a positive attitude and sense of humor. That keeps me going and I hope it will do the same for you.

 

[hopingforthebest]

Pma

My husband was diagnosed with PMA February 07. His PMA has affected upper body only, as his legs still strong. Both arms are useless and back muscles and chest muscles gone. His has affected his diaphram so he is on Bipap for breathing 22 to 24 hrs. a day.
He too was a strong athelete and rode bike 5 days a week, ran 7 days, worked out in gym 4 days a week, lifting weights. But he says, "it is what it is". He would do anything to raise his grand daughter up over his head or throw a baseball to his grandson but for now he is thankful to just enjoy them and us.

Hang in there guys and enjoy what you have with your family and be thankful for the help you get in everything. The disease sucks but you are not alone.

 

[manymercsmike]

This is my first post in a new world, so bear with me

I am a Scottish guy with SOD1 related ALS, so it appears to be genetic.

I was a keen and fanatic rugby union player and fan, this bastard problem has robbed me of both. Started in left leg about 5 years ago, and has gradually worked its way onwards. Despite slow progress, specialist found a gene mutation in SOD1, so it looks irreversible.

Now need a stick to walk safely. Left foot, calf, gone. Right foot, calf, going and nearly the same. Even more worryingly left quad shrinking, tho at this stage right quad feels the same. Now starting in left forefinger. I look at it and want to shake it!

Scared? I'm ****ing terrified. I am 35, have a 1 yr old daughter and a very understanding wife.

PMA - may be dependent on age. My symptoms have been here for a few years, at first I thought it was PMA, but the gene tests kind of knocked me back. Have you had these?

take care
Mike

 

[Al]

Hello Mike. Just wanted to say Welcome but sorry you had to come looking for us. I hope we can help with support and advice.

AL.

 

[boomiss]

Did you know?

Tom I noticed that you said you were a Marine... did you know that the Government has admited to links to ALS etc. and All Branchs?
Check out this link.....

http://www.alsmndalliance.org/news/29/25/Veterans-Gain-U-S-Benefits-for-Lou-Gehrig-s-Disease.html

I am sorry I do not know the answers to your questions but I really wanted to make sure you were aware of this..

By the way, thanks for serving my country..

Best of Luck to you,
Melissa
(Daughter of Air Force related ALS/PMA Victim)

 

[maryhahnward]

Thanks Melissa and everyone else for their kinds thoughts and insights. I am Tom's wife and writing on his behalf. He seems to be locked out of the forum and can not figure out why.

Tom will be having another EMG this Friday. He is a patient at Duke across from the VA. Apparently one of his doc's colleagues is the chief neuro at the VA hospital. Tom still does not have a definite diagnosis. His diagnosis' have run the gamut of CIDP to Multifocal Motor Neuropathy to PMA - sometimes the doc says it is idiopathic. He has had IVIGs which did not work, was recently prescribed Levetiractam for the increased fasciculations but it did not seem to work though he did not stay on it very long due to an increased mood changes that were not good.

Tom seems to be having a real upswing in symptoms lately. He has trouble coughing or laughing without feeling he will pass out. He has passed out from coughing last year. We went to the ER, stayed the night, and then wore a halter monitor for 48 hours. His heart is fine. I felt, and still believe, his chest muscles have weakened not allowing him the ability to cough productively. His chest looks concave compared to his belly. His fasciculations are out of control - across his belly, in his arms and his legs, his left arm is nearly useless, right arm is declining.

So we will see what transpires on Friday. In a way I hope we walk away with a diagnosis and in a way I hope we do not. If it is for sure PMA I hope he gets benefits from the VA. I'm not sure how all of that works but it seems that they will have call it slowly progressive ALS for him to receive benefits instead of PMA. Maybe someone on the board has some experience with this that they can share.

It is good to see the VA is taking care of those who served. My son has served in the Army for six years and has done three tours of duty - two to Iraq and recently returned from Afghanistan. I hope he never has to struggle with the VA if he ever needs them.

Thanks again everyone,

Mary

 

[hopingforthebest]

pma

Dear Mary

It sure stinks that we are all having to even be on this wonderful forum.

One thing I want to clear up for you is that PMA is a classificatiion of ALS. My husband was treated with the IVIG for almost one year "hoping" it was multifocal motor neuropathy, which our local neuro had hoped would work for him. When we went for second opinion, our local neuro, sent to university ALS clinic and that day they told him okay to try the IVIG but they doubted it was MMN and that PMA/ALS was his diagnosed.

When and if it is PMA/ALS, the ALS clinic will sign all necessary paperwork for you to begin the long paper process. In their paperwork they only referred to the disease diagnosis as ALS, never said PMA.

Good luck and ask any questions and feel free to private message me for any questions you want to keep personal. Believe me, I sure have many friends on this site that are taking care of their loved ones.

Try and get some Mary time for yourself too!

Patty

 

[little willie]

Greetings to you all

Yes, Tom, others do have this mess. I was diagnosed in December of 2001. I too was bounced between several diagnoses before going to Houston and getting the final word, PMA.
My weakness has been such that is has affected my entire body except my breathing and swallowing. I have progressed to walking very little with the help of a walker or stroller but mostly use a powerchair. I cannot raise my arms over my head and it is getting more difficult to feed myself or pick up a drink glass.
I wasn't a maring but I did work outside climbing power poles for a living and it has been hard to give up the very things that I loved to do so much. But everyone take heart. There are many trials and tests going on for treatments that will help to build muscle in the body. I continue to pray daily for treatment and a cure fot this and many other types of motor neuron diseases.
We must all continue to have hope until the day of treatment arrives. YES, I AM AN OPTIMIST.
MY GLASS IS FULL NOT EMPTY.

GODS LOVE TO YOU ALL,
bill

 

[maryhahnward]

Re: Greetings to you all

I have not posted in a while. The diagnosis for Tom is brachial amyotrophic diplegia. All we know about this disease is that it is a variant of ALS and quite rare. At least it is a diagnosis, it has a name.

Mary

 

[Ziggy33]

Wow Tom,

With the exception of the back aches, I could plug my name into this post and it would read the same. Right down to a hitch in the Corps. This sucks.

 

[maryhahnward]

Ziggy33,

This is Tom's wife, he doesn't go on this board too much. Have you applied for VA benefits? If not use the PVA to help you file a claim. Tom actually doesn't have PMA these days. They are calling it Brachial Amyotrophic Dysphagia - a rare variant of ALS.

Please don't hesitate to contact me if I can help you in anyway. My knowledge of all of this is limited but my desire to help is unlimited.

Mary

 

[Ziggy33]

Thanks for the offer Mary.

My medical coverage is quite good. There are so many variants of ALS it makes your head spin.
I hope Tom's new diagnosis is a positive one.

 

[maryhahnward]

Hello,

Well it wasn't the medical coverage I was getting at - veteran's with ALS have been granted disability benefits, you may want to look into it through your PVA to see if PMA as a variant of ALS would be included. We have good health insurance too but the disability benefit is helping in other ways.

Mary