I'm Tom, new here

[tmasters]

I found this thread a couple days ago and thought I'd stop lurking and get on to introducing myself. I'm Tom. Hello!

I was diagnosed (I think) on January 23, waiting to get into UCLA for a 2nd opinion. My neurologist says it's some kind of Motor Nueoron Disease, and suspects ALS. This is based on the exam, blood work, an EMG, and a NCV. So frustrating how long it takes to get the second opinion, but I'm dealing with the hurdles of the insurance, etc.

I'm 51, have a wonderful wife which I'm especially thankful for NOW, 4 mostly grown kids, and a grand-baby on the way. :-D

My symptoms started last summer with leg cramps, weakness, especially the right leg. This was after taking Crestor for almost a year; I hope that didn't trigger it! I can still walk, though slowly. I've got the muscle twitches now--they keep me awake at night. It's starting in my right hand/arm, too.

Trying to keep a positive outlook. The first 3 weeks were horrible but my mental state of mind is much more accepting now. I'm still enjoying life and doing what I've always done, just being a little more careful that I don't waste time. I've got some trips planned.

So glad I found this site. There's so much interesting and valuable information here.

I guess if I had a question it would be about a wheelchair/walker. I don't need one (yet), but when I go to the mall or to Disneyland, or whatever, I just can't walk very far any more before my legs give up. I really don't want to sit in a wheelchair, but if it means the difference between sitting at home or going out, maybe it's better? Any suggestions?

Thanks!

-Tom

 

[Al]

Hi Tom. Welcome but sorry you have to be here. Take the wheelchair or the scooter. Save your energy for the good things. We went to Vegas a year and a half ago. First time I'd used a chair. It wasn't as bad as I thought, except for the son in law who pushed me 2 miles up and down the strip in 108 degree weather. But it's a dry heat, right? LOL. Save energy for the things that matter.
AL.

 

[juliesmile]

We need to talk

Tom,

I'm new too. Just arrived a couple days ago. This site can be addictive especially whene we are all just searching for answers to something that can change our lives forever. You and my husbands symptoms sound so similar. Please read this and let me know if it sounds familiar. He's 55, I'm the loving wife whom he appreciates more than ever now, we have 4 pretty much grown kids and he began to notice difficulty walking about a year or so ago. He just kept telling me to slow down. Then on our anniversary last year in April, we discovered it was easier for him to walk if I leaned into him with my right hip against his left hip. After a surfing trip in Doheney, he discovered he just couldn't walk through the sand carrying his board. He was quite shaken. He is a very muscular lean athletic guy, has always surfed. This really frustrated him but spurred him into action. When we got back he began to really try and figure out what was wrong and discovered he couldn't stand on the ball of his left foot. He simply couldn't elevate his heel off the floor. So finally we had something to take to the Dr. and that began our journey. Refered to neurologist, EMG on left leg, not normal, was fitted for brace for drop foot. (this was Oct.) by Dec. I noticed unsteadiness when standing on his right leg. Back for another EMG. on right and left legs, Left leg worse and showing signs of nerve damage on right leg. Some weakness showing up in right leg as well. Thought we better see if something was going on with the upper body as well since Steve hadn't really noticed any problems with the right leg and actually had damage there. The upper body had some abnormalities, but the Dr. considered them inconclusive. We are now refered to Neurologist at U.S.C. he wants to do all his own tests and has ordered the "Athena" blood work.

He's a farmer and his work is very physical. He has my son working with him now and that has been a God send. Ijust don't know what he would do with out him at this point. Steve is always just so wiped out by the end of the day. He seems to fatigue much easier now. He says he notices that even with shoveling he just doens't have the duration he use to have, he says he tires so quickly. I didn't mention he has some significant atrophy of his left lower leg, i can see and feel fasiculations but he says he they don't bother him.

Please relate to what you can. Thank you so much for joining. My heart goes out to you and your wife. I can only imagine how devastated you must be at this point.

 

[tmasters]

Julie,

Wow! Yes, this does sound familiar! So you have to know how much your husband really loves you and appreciates you and all your support. I've read here about PALS who have nobody they can depend on and my heart breaks for them.

I think my first sign was actually increased cramping in my calves but I've always had them to some degree so I just made a mental note to stay hydrated and eat more bananas and stretch and hopefully it would go away; no big deal, right? But last August on a trip to Hawaii the family kept asking about my limping. I didn't even notice it sometimes at first. But when I thought about it, it was as if my left calf muscle wouldn't allow my foot to push off when I stepped. So some kind of muscle weakness. And initially it only happened after 100 yards or so of walking. Now of course it's spread to the other leg and seems like my upper leg muscles are much weaker... I can't stand for long periods without feeling unstable. I have cramps on both hands and my back, muscle twitching in my arms, back, and especially my legs. The twitching doesn't really bother me either it just keeps me awake as if somebody's poking me. Fortunately, very little pain anywhere except when a bad cramp hits.

I'm fortunate to have a sit-down job (engineer), so I should be able to work until my hands can't type any more, hopefully a long time from now. I feel for your husband Steve, who will be devastated when he can't do the farming work any more. We men have to feel productive and be able to provide for our family. It's a macho thing I guess. But when the time comes, you need to let him know it's all right and how great it was that he was able to provide for as long as he was able. Thank God for your son and his help!

Yesterday, I finally got an appointment to see Dr. Michael Graves at UCLA on March 10 for my second opinion. Yay! They said to allow 2 hours; he will probably do another EMG and then a consult. I've never heard of the "Athena" blood work so thanks for giving me something to research before I go in. My last testing showed Arsenic poisoning so I don't know what to make of that? I'm surprised they haven't ordered a re-test (yet).

-Tom

 

[juliesmile]

Too close for comfort, yet somehow comforting

Tom,

I swear that is exactly how it started with Steve, noticing the limp, asking what's up with that? He too thought the cramping was just typical. He's heard how when you get older you tend to cramp more, so he just wrote it off as ordinary. Same with the weakness and lack of stamina. All symptoms of aging right? It just happened so fast with him.

In my research I have run across Graves. He's an ALS specialist right? The Athena blood work tests for some of the more rare neurological diseases. It's a lab on the east coast. And if this is your second opinion then yea, the guy will probably want to conduct all his own EMG's and more blood work. So prepare to hurry up and wait. Thank God your job is sit down. Steve will be able to manage for quite some time I believe, as he has Zane ( our son)and 3 other permanent employees. Our employer is extremely sensitive and caring. In fact he arranged for our meeting with Dr. Beydoun at USC as he is friends with The Dean Of Medicine at USC. We were thankful, but we passed up an appt. with a Dr. Sheean at UCSD who is co -director of an ALS clinic. This Dr. Beydoun's speciality is in Myasythenia Gravis. I just hope we don't get referred again.

Fortunately we don't have a diagnosis yet. It seems Dr.'s are very careful about passing out A.L.S. diagnosis'. And as long as we don't have a diagnosis we can hope for something else that can explain these symptoms.

Does your wife visit this site? My husband chooses to stay very uninformed. He would never visit this site. He has been so positive so far but as of late I can see depression setting in. I understand what you are saying about his need to feel like he is still "the man", I try to be very careful. This has to be an extremely difficult thing for a man, but seriously all we want to do as women and your wives, is love you and take care of you. We want to be there for you, yet this goes behond anything we (I) have ever had to comprehend. No one gave me a lesson plan for this. I feel so awkward and lost.

Anyway, I'm blabbing. Thank you so much for your responses. Good luck at your upcoming appt. I'm so thankful you have a supportive family, as my heart just breaks for all those out there who don't.

 

[Peg B]

Hi Tom,

Welcome, I too am sorry you have to be here. Your positive attitude will be very helpful.

I had two things I thought may help. One is tonic water (has quinine) for cramps. I do not get any as long as I drink about 1 liter a day. I get Faygo Diet. no calories. I like it a lot, some don't but it does take care of the cramps. Bananas don't seem to help me.

The other is you may want to try voice recognition for your typing work. Like the wheelchair it will save your strength. Dragon NaturallySpeaking Preffered version 7 or higher, is hands down the best. It can be put on at home and/or work. Everyone can use it and it types faster than most of us can talk (167 words per minute) once you train it. I just thought I would throw those ideas out to you. Best Wishes, Peg