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Oregon Native

Member
Joined
Jan 21, 2010
Messages
22
Reason
PALS
Diagnosis
03/2010
Country
US
State
Oregon
City
The Middle Part:)
I first wanted to say hello to all the amazing people of this forum, this is my first post after stopping by here quite often. It started in my hands, pain first, then muscle loss, now they look quite thin with no muscle tone, during this time I noticed fascillations in arms, torso, and thighs. Now my arms are cramping and getting thinner with more loss of muscletone. Everything seems to be happening bilaterally(at the same time, both sides) The forearm cramping is getting more severe. Now my calves feel tight frequently, and thighs are getting occasional cramps. My mri came back fine, all my blood and urine tests came back fine. The emg showed this to be happening in the lower motor neurons only. My neuro thinks this is probably als, just waiting till I can get in for spinal tap, before he makes final diagnosis. I would love to hear from others where their symptoms started either like mine or with lower motor neuron only diagnosis and how fast does this usually progress, I'm 39 and in fog, still digesting all of this. The people on this forum have given me inspiration, I look forward to hearing from all:)
 
Hi Oregon Native

Although undiagnosed, I can recognize many of your symptoms to what I´m experiencing.
(bodywide loss of muscle tone("floppy muscles"), tight calf-muscles and fasciculations everywhere-calves/thighs/arms/face)

For how long have you got the symptoms? From what I know it doesn´t sound like a typical ALS-onset (pain/muscle problems multible places at the same time)

And have you got any weakness?

Good luck with the spinal tap.


Best wishes
Mads
 
I first wanted to say hello to all the amazing people of this forum, this is my first post after stopping by here quite often. It started in my hands, pain first, then muscle loss, now they look quite thin with no muscle tone, during this time I noticed fascillations in arms, torso, and thighs. Now my arms are cramping and getting thinner with more loss of muscletone. Everything seems to be happening bilaterally(at the same time, both sides) The forearm cramping is getting more severe. Now my calves feel tight frequently, and thighs are getting occasional cramps. My mri came back fine, all my blood and urine tests came back fine. The emg showed this to be happening in the lower motor neurons only. My neuro thinks this is probably als, just waiting till I can get in for spinal tap, before he makes final diagnosis. I would love to hear from others where their symptoms started either like mine or with lower motor neuron only diagnosis and how fast does this usually progress, I'm 39 and in fog, still digesting all of this. The people on this forum have given me inspiration, I look forward to hearing from all:)

Hello, I am new here too. Its My Husband thats the Patient, his started in his right foot, and now it appears to be in his right hand. He after 2 EMG's, MRI. Blood test, was told it's ALS, he has Fascillations also in his upper body, at first it looked like Jiffy Pop, Pop corn popping in his upper body, now after 1 full month on the Rilutek, they have slowed down alot. We went back yesterday to the Dr. to get the results on his DNA Genetic Blood test, because His Moms Sister was told she had ALS 25+ years ago. Hers started in the Throat, But to our surprise the test showed this was not from a Family Gene, making it Sporadic ALS. I still dont understand much of this at all, i think i'm still in denial. but we have never been told, or talked to about a spinal tap, so that raises more questions for me. My Husband is a Union Electrician, and was told on Dec. 16, 2009 to quit work. thats harder on him than anything. The good news yesterday was since 30 days ago his condition has NOT gotten any worse. I continue to research for knowledge, he refuses to hear anything about it. Someone told me thats just the way some people cope, and besides he knows i will worry enough for both of us. He is 55. when is your Spinal Tap going to happen? and please mark me as your friend here and keep me informed, I am sorry i cant help you more, but as i said i'm searching for answers myself. Until we chat again. I will be Praying for you, and awaiting your results, and Praying its something other than ALS. Sandra
 
Hi, and welcome to the forum. I've been here since Sept...my husband is diagnosed with MND-still pending written ALS diagnosis. Doctors tell us they "think it's ALS, but need to observe his progression, because he's still physically very capable (thank God). They also said he didn't need to do a spinal tap, because all his other tests ruling out autoimmune and viral tests showed absolutely nothing "abnormal". That and the muscle biopsy are the only things still to do, but now we have to wait 12 weeks for his muscles to "recover" from the last EMG/NCT for the muscle biopsy. He was pretty sore for several days after the last EMG/NCT. He also showed LMN symptoms only at first, but now is also showing UMN involvement.

I'm also the research nut...my husband also chooses not to want to know too much. His feeling is..."I'm living, experiencing right now, and I know what it will be like eventually...I don't want to know what's happening in 6 months"...

His symptoms started in his calves-the "popcorn popping" analogy is a great description! They are now throughout his body, including his diaghram, with weakness/fatigue getting worse, but still very functional...

Sorry you are "needing" the forum, but welcome. It's a lovely, wise, compassionate group of people...who also make me laugh!

Peace,
 
Thank you for your responses, it is nice to hear from people who are going through the sames types of things as myself. I first noticed pain in my hands about a year ago, then followed by muscle loss in them by the end of summer, most muscle was gone especially between thumb and index fingers on both hands, then the rest of my hand, now arms. The crazy thing is all of this is happening at the same time to both sides. Tonight I am experiencing forearm cramping in my left arm, but it trades off everyday, tomorrow it should be in the right:( I keep praying for a miracle, that the spinal tap reveals something else. Thank you again for your replies and sharing your stories, it means alot and I pray that a better treatment or cure is found soon. Has anybody had their symptoms appear bilaterally or had a fast or slow progression with lower motor neuron type.
 
do you have clinical weekness, can you still use your hands?
 
Yes I can still use my hands per say, but my thumbs are very weak, I can barely hold anything between thumb and finger but my grip is still there, only a much weaker version of how it used to be. I'm definitely weaker over all as well.
 
Hi Oregon Native. Mine started mostly LMN and 6 years after diagnosed. I can still do quite a bit. Eat, drink, type 1 fingered and use the mouse. We're all different. I've been using a Bipap for sleeping since Jan. 05. We lost a member a few weeks ago that had it 19 years I think it was. Don't let the statistics scare you. You may not even have ALS, it could be MMN. We have a forum here for that if you don't know about it. Good luck with the further testing.

AL.
 
Thank you Al :) I think the thing i'm trying not to do is give up hope, I just keep thinking symmetrical, could it be MMN, or even CIDP because I was reading that CIDP can happen symmetrically. Where as ALS and MMN tend to happen more asymmetrically. I'm giving it to God, there's a reason for everything. The folks here on this site are very brave, thank you for sharing your stories and battles and thank you again for your replies.
 
Hello, Have you had the Spinal Tap yet, i mut have missed when that was taking place. I hope your well today
 
Hi Sandra, thank you for your prayers, the neuro wasn't able to get me in for a spinal tap until the 10th of February. He doesn't think it will show anything, it's kind of a bummer when your neuro loses hope for you.Something i have been noticing recently is aching in the sides of my elbow and shoulders. The fascillations are all over but on my thighs they kind of roll and briefly leave a line it is really weird to watch. I am hoping on the lower motor neuron part of this to be something else but it's not looking good. I have been on an emotional rollercoaster this weekend. Take care and I will pray for you and your husband.
 
are you seeing a neuro with als experience? sorry you have to be here at all. hope we can help.
 
He specializes in Neurophysiology. I am planning on heading up to Portland to get a second opinion though. Has anybody's throat issue ever started with the feeling like something is in there, kinda like the same feeling when a pill is stuck in your throat but doesn't go away really?
 
The EMG will only detect lower motor neuron trouble. Upper motor neuron degeneration will be evident by clinical observation (spasticity, clonus, Babinski, Hoffman, etc).

It takes both upper and lower motor neuron degeneration in order for a diagnosis of ALS to be given. As Al mentioned, MMN involves lower motor neurons only.
 
Thank you Zaphoon, my question then is, all the vials of blood that they pumped out of me several times all came back normal. Could it be then that I may have MMN and the blood tests haven't yet shown that, and is that something that could possibly show up in the spinal ? Thank you all for your help, you all have been very kind and welcoming, not just me, but all new people here on this forum, who are confused, scared, and just looking for some real life answers from actual people.
 
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