juliesmile
Active member
- Joined
- Feb 20, 2008
- Messages
- 61
- Reason
- Loved one DX
- Diagnosis
- 03/2008
- Country
- US
- State
- CA
- City
- Borrego Springs
I'm writing this for all of those of you who are desperately searching for a story they can or can't relate to. On the one hand I wanted to find something that I could relate to, but on the other hand what that meant was very scary, but I needed to know!
Our journey began about a year and a half ago. That's when Steve (my husband) say's he first began to notice something "just wasn't right. " We estimate this as we have no real point of reference.
March 2007
The first actual misstep happened while moving our daughters. He stumbled while carrying something up the stairs. You have to know Steve. He's so agile, very fit, lean, just naturally gifted physically ( o.k. I love the guy), anyway, stumbling just isn't something he does.
April 2007
Then about a month later while celebrating our anniversary, we were walking into town to eat dinner and he kept saying, "wait up, why are you walking so fast?" I wasn't. So I have a bum right hip and I suggested we put our hips together, and that added support really helped. People thought we were newleyweds or something and really we were just holding each other up. Then in Sept. he began limping. I kept saying "go to the Dr.", he replied, "For what, I don't have any pain."
Sept. 2007
Then in Sept. during a surfing trip, he realized it was very difficult carrying his board through the sand out to the ocean, and once he got out there he had no control over his board.
Oct. 2007
Finally on our return he did a little self test and found he could not elevate his heel off the floor. It wouldn't budge. He could do so with his right foot fine. So finally we make an appt. Of course the local country Dr. sends us off to a Neurologist. He does an EMG/NVC on left leg and determines there is some nerve damage, gives us a brace and sends us for an MRI and ANA bloodwork (both come out fine). No atrophy noticed at this point) By now we have begun to go "On Line". So needless to say I"ve begun to pick up some suspicions.
December 2007
In Dec. I watched him putting on his brace and he was all over the place. So I asked him to try and elevate his right foot off the floor, (barely) stand on one leg with out support (extremely wobbly). And by now there is visible atrophy in left leg. So back to Dr.
January 2008
More EMG/NVC studies, this time on right leg and arms. Right leg showing nerve damage and left leg worse, arms inconclusive but not normal. At this point his reflexes are normal, except for an absent left ankel jerk, normal babinski. Also, by now I have noticed fasiculation while laying in bed I could feel these little pulses going off all up and down his right leg, and his foot would flex then relax and flex and relax. This went on for a good 15 min or so until I couldn't stand it any longer and moved. He was fast asleep. This Neuro at this points wants a second opinion. He wouldn't say it was MND, but he wouldn't take it off the table either. He actually said he had no idea.
Feb, 2008
We see Neuro at USC. Dr Beydoun. He was very thorough on the consult. Had Steve strip down so he could see his whole body, lots of questions etc. But in the end, of course he wanted to run his own tests. So we come back in 1 month for EMG/NVC. We had blood drawn for 'The Athena Bloodwork".
March 2008
That takes us to our appt. on the 10th. He did the EMG/NVC, which was much more sophisticated and thorough than anything we had had before. I figured we wouldn't get a diagnosed on that day, I figured more tests more waiting. But Nooooo! he takes us back into his office and just say's "well it looks like MND. Unfortunately that is what it is", we're in shock. We need him to elaborate, to explain to do something, but that's just it. Finally I look at my notes ( I actually brought a spread sheet explaining all the MND and their definitions), so I ask "do you mean Primary Lateral Scelerosis, Multifocal Motor Neuropathy, or Progressive Muscular Atrophy?" He said, "yeah, that's what I"m calling it, PMA". So we ask what to expect, and he goes through a pathetic explaination, tells us to try and live as fully as we can, don't do any more than you use to but don't do any less, try not to think about what's to come. See you in 4 months."
I'm so angry. Steve needs help, he needs counseling, sleep meds. There just wasn't any support. We are seeking a visit with UCSD, they have an ALS clinic. Hopefully they will accept us. I hope you can't find anything in here you relate to. As much as we wanted the waiting and wondering to be over, this is far worse than I ever imagined. Only people here on this site and in this situation could possible understand.
Thanks for listening and hopefully someone will get something out of this.
Julie and Steven
Our journey began about a year and a half ago. That's when Steve (my husband) say's he first began to notice something "just wasn't right. " We estimate this as we have no real point of reference.
March 2007
The first actual misstep happened while moving our daughters. He stumbled while carrying something up the stairs. You have to know Steve. He's so agile, very fit, lean, just naturally gifted physically ( o.k. I love the guy), anyway, stumbling just isn't something he does.
April 2007
Then about a month later while celebrating our anniversary, we were walking into town to eat dinner and he kept saying, "wait up, why are you walking so fast?" I wasn't. So I have a bum right hip and I suggested we put our hips together, and that added support really helped. People thought we were newleyweds or something and really we were just holding each other up. Then in Sept. he began limping. I kept saying "go to the Dr.", he replied, "For what, I don't have any pain."
Sept. 2007
Then in Sept. during a surfing trip, he realized it was very difficult carrying his board through the sand out to the ocean, and once he got out there he had no control over his board.
Oct. 2007
Finally on our return he did a little self test and found he could not elevate his heel off the floor. It wouldn't budge. He could do so with his right foot fine. So finally we make an appt. Of course the local country Dr. sends us off to a Neurologist. He does an EMG/NVC on left leg and determines there is some nerve damage, gives us a brace and sends us for an MRI and ANA bloodwork (both come out fine). No atrophy noticed at this point) By now we have begun to go "On Line". So needless to say I"ve begun to pick up some suspicions.
December 2007
In Dec. I watched him putting on his brace and he was all over the place. So I asked him to try and elevate his right foot off the floor, (barely) stand on one leg with out support (extremely wobbly). And by now there is visible atrophy in left leg. So back to Dr.
January 2008
More EMG/NVC studies, this time on right leg and arms. Right leg showing nerve damage and left leg worse, arms inconclusive but not normal. At this point his reflexes are normal, except for an absent left ankel jerk, normal babinski. Also, by now I have noticed fasiculation while laying in bed I could feel these little pulses going off all up and down his right leg, and his foot would flex then relax and flex and relax. This went on for a good 15 min or so until I couldn't stand it any longer and moved. He was fast asleep. This Neuro at this points wants a second opinion. He wouldn't say it was MND, but he wouldn't take it off the table either. He actually said he had no idea.
Feb, 2008
We see Neuro at USC. Dr Beydoun. He was very thorough on the consult. Had Steve strip down so he could see his whole body, lots of questions etc. But in the end, of course he wanted to run his own tests. So we come back in 1 month for EMG/NVC. We had blood drawn for 'The Athena Bloodwork".
March 2008
That takes us to our appt. on the 10th. He did the EMG/NVC, which was much more sophisticated and thorough than anything we had had before. I figured we wouldn't get a diagnosed on that day, I figured more tests more waiting. But Nooooo! he takes us back into his office and just say's "well it looks like MND. Unfortunately that is what it is", we're in shock. We need him to elaborate, to explain to do something, but that's just it. Finally I look at my notes ( I actually brought a spread sheet explaining all the MND and their definitions), so I ask "do you mean Primary Lateral Scelerosis, Multifocal Motor Neuropathy, or Progressive Muscular Atrophy?" He said, "yeah, that's what I"m calling it, PMA". So we ask what to expect, and he goes through a pathetic explaination, tells us to try and live as fully as we can, don't do any more than you use to but don't do any less, try not to think about what's to come. See you in 4 months."
I'm so angry. Steve needs help, he needs counseling, sleep meds. There just wasn't any support. We are seeking a visit with UCSD, they have an ALS clinic. Hopefully they will accept us. I hope you can't find anything in here you relate to. As much as we wanted the waiting and wondering to be over, this is far worse than I ever imagined. Only people here on this site and in this situation could possible understand.
Thanks for listening and hopefully someone will get something out of this.
Julie and Steven