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juliesmile

Active member
Joined
Feb 20, 2008
Messages
60
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
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Julie - sorry to hear of your husband's diagnosed. I live in the same general area and was first seen by a neuro in Palm Springs and then referred to UCLA. Very thorough and very helpful. I was first diagnosed in 12/07 and have been back two times. Last visit yesterday I saw a Respiratory Therapist, Occupational therapist and physical therapist in addition to the neurologist. It has been and will be that way every three months and I have the number of the MDA/ALS contact person should I have any needs in between. In case it doesn't work out in San Diego you might give UCLA a try. Also in case you need it I got my Ankle/Foot Orthotics (braces) at Coachella Valley Orthpedics in Palm Desert - my physical therapist was very impressed that I got "the good ones". In addition to UCLA the Loma Linda University has a very good ALS clinic. I go to the ALS support group there - 3rd Thursday of the month.

Hope this helps.

Sharonca
 

juliesmile

Active member
Joined
Feb 20, 2008
Messages
60
Reason
Loved one DX
Diagnosis
03/2008
Country
US
State
CA
City
Borrego Springs
oops

Sorry guys, I have my abreviation wrong. NVC should be NCS, nerve conductivity study
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
juliesmile

juliesmile, i can so relate to that and some. iv'e been ill 8yrs and after everytest going my neuro gave diagnosed of mnd in nov07, but will not give me diagnosed of als/pls.
i have mainly umn s/s but a few years ago developed some lmn s/s, my doc told me neuro said in his last letter he did not know where i fitted als/pls. so me and doc was'nt happy and my doc got me a appt for mnd clinic and i go next thursday, hopefully i will get a diagnosed then. but i do need a emg as the flaccid paralysis/hypotonia is getting worse a few years ago i could not tell a difference but now i can in my left leg especially, when i walk the muscles at the back of the leg no longer contract and my leg just flops down when i make a step with it.
i hope you get more answers at your next appointment
best wishes to you both
caroline
 

Bobby C

Active member
Joined
Dec 31, 2007
Messages
40
Reason
PALS
Diagnosis
12/2007
Country
US
State
Texas
City
Austin
Sharonca, what do you mean by the "good" AFO's? I have them for both legs, but they are plastic. They help some, but may not be the "good" ones.

Thanks.

Bobby C.
 

juliesmile

Active member
Joined
Feb 20, 2008
Messages
60
Reason
Loved one DX
Diagnosis
03/2008
Country
US
State
CA
City
Borrego Springs
Baffled

Olly,

Thanks for the support. It is so baffling that the Dr's would let you go for so long with such devastating and life affecting symptoms. It makes me wonder if our Dr. was maybe too hasty. It seems to me you may have PLS, which would be good to know because you can live a normal life span with that. Why wouldn't a Dr. jump on the chance to give you that hope. Although you did say you were exibiting some LMN signs, at which point obviously things change. I think they are so arrogant to think they can know what we can and can't handle and what we should and should not know. We're not stupid. T his has been devastating of course and we would love for the diagnosed to be different, but if it truely is this PMA then by God we want to know so we can plan, do things now while he is still able to walk. So many trips to take and people to see. He may live for 10years, but chances are the last 5 or so he may not be abulatory.

Take care, Olly, my heart is with you. Let's hope for answers, but pray for miracles.

Julie
 

juliesmile

Active member
Joined
Feb 20, 2008
Messages
60
Reason
Loved one DX
Diagnosis
03/2008
Country
US
State
CA
City
Borrego Springs
Support Group

Sharonca,

Thanks for the input. Can anyone attend the support group? Until we get into UCSD it would be nice to have a place to go.
 

givenin

Distinguished member
Joined
Jan 25, 2007
Messages
109
Reason
PALS
Country
CA
State
b.c.
City
salmon arm
I can't imagine anyone being left out of a support group that needs it for this, I know my sister-in-law went to one in Cagary.AB. to understand better what we would be going through. The Dr. who gave my husband the news made it clear to him to do what he really wanted to do with his family very soon and not to waste money on kookey cures as he felt my husband had maybe 2 1/2 years left at the rate he was progressing.

We are working on 2 years and it looks as if that Dr. may be right if the Lithium dosn't work.
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Bobby C -
Yes there are different AFOs and the ones I have are the best. I'm telling you I love these things. They are carbon fiber AFOs. They go from flat in the shoe, connect on the outside of the leg to a piece that fits the front of the leg and velcros around the leg. So comfortable. I got them at the Coachella Valley Orthopedics in Palm Desert CA. The Brand is ToeOFF carbon composite AFO. 760-345-4779.

Julie -
there is a ALS support group that meets in Palm Desert and one that meets in Loma Linda. I go to the Loma Linda one but I've heard that the Palm Desert one is good also. That might be a little closer to you.

Palm Desert one is 1st Tues 10:30 to noon, Portola Community Center, 45-480 Portola Ave., Palm Desert. Contact is Griselda Perez 951-259-9222.

Loma Linda is 3rd Thurs (this Thurs) 10:30 to noon 11370 Anderson Street, Loma Linda, CA - ask for the room number from the info desk just inside the building. Contact Woody Tooton, 909-797-4213

I won't be able to make the meeting this month due to a dr appt.

Sharonca
 

juliesmile

Active member
Joined
Feb 20, 2008
Messages
60
Reason
Loved one DX
Diagnosis
03/2008
Country
US
State
CA
City
Borrego Springs
two braces?

Sharonca,

Thanks for the meeting time and places. We live about 75 miles from Palm Desert so we'll probably go there.

My husband has wondered if he will be able to walk with two of these braces. He has one on his left leg right now and in all liklihood it will be his right leg to go next as he already has some weakness. Do you wear one on each leg and how well are you able to get around?

julie
 

bluebottle

Active member
Joined
Mar 12, 2008
Messages
36
Reason
PALS
Diagnosis
09/2008
Country
uk
State
england
City
england
Julie,
I waer two AFO - a toe-off on the right and an ordinary white plastic on the left and get on very well with two AFO's - if that helps at all
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Julie - I wore one brace for three weeks and then got the second. I could not believe how wellI walked with the two. Could not stop grinning! The people at my support group could believe the difference. I took off my shoes and showed off like kindergarten show and tell!

Sharonca
 

dominic1988

New member
Joined
Mar 17, 2008
Messages
1
Reason
Other
Country
UK
State
norfolk
City
norwich
I'm not sure if I have motor neurone disease. I think I have muscular fasciculation in my upper left back....feels like a tingling tightness. I can't feel the tip of my right foot big toe. I'm scared. I have no idea if I have the illness.
 

juliesmile

Active member
Joined
Feb 20, 2008
Messages
60
Reason
Loved one DX
Diagnosis
03/2008
Country
US
State
CA
City
Borrego Springs
Yeah!

Sharonca and Bluebottle,

Thank you both, my husband was delighted to hear this!

Dominique1988, it doesn't sound like fasiculations, as they are just twitching movements under the skin, and don't feel tight or tingle, usually there isn't any real sensory impairment with ALS. but look further on this site and see what you can learn.
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
To Dominick

What on earth makes you think you have ALS? I'm not seeing it buddy. Relax. If those are your only symptoms, then I think you can be rest assured you most likely don't have it . . . unless you're not sharing everything.
 
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