Now what is going on with me?

[northerngirl]

I go for my EMGS on the 19th. My tongue is still weird but now I have a cold and my body the last 3 days is doing something new and weird. I feel little twings al over my body. There don't cramp, the don't viberate, it just feels like a tweak. I get one every little while, I am total freaked out over it of course so I obsesively pay attention. is this the fasciculations I have been hearing about?:cry:

[northerngirl]

I guess what I need to know is everything I read in regards to ALS seems subjective and ambiguous. I read the words: muscle weakness, atrophy and fasciculations over and over again, but there is not a great deal in defining these terms.

Is the muscle weakeness such that the limbs are disabled? Is this a perceived weakness, how is this diagnosed?

With regards to fasciculations, what do the feel like? How would you describe them?
Are they localized to start?

[jimercat]

No the limbs are not disabled all at once. The muscle atrophies/becomes weak and slowly but surely use of the appendage dwindles. The weakness can be measured by simple exam. The doc has you squeeze his/her hands or push this way and that with arms and legs. Fasciculations can be described as the muscle twitching exactly like when you get a "tic" on your eyelid. In my experience with my PALS, the twitching is localized and spreading on its merry way...

[DMHltd]

I agree, there's a great deal of ambiguity in these terms. Have you read the sticky note at the top of the forum list about fasciculations? The fasciculations I get come in three flavors. One is a twitch of a muscle in the hand that causes the thumb or a finger to move back and forth. Another is a spot on the body that is like a slow or sometimes fast heartbeat where you can see the skin move up and down. The third is a quick one shot "poke" somewhere that is gone before you can see it. Since I've only felt them and not seen them I'm assuming they are just like the second type except single-fire. In ALS these twitches signal the dying of nerves. In other diseases they twitch but don't die. My fasciculations started on one hand and not hit just about every where except the tongue and private parts (so far).

Real Muscle weakness was described to me by a neurologist as when a muscle can no longer do what used to be able to do. For instance you can't pick something up that you should be able to pick up. In ALS this happens because the nerves no longer give the muscles the necessary signals to move. And after so long not moving the muscles wither away which is called atrophy.

Hope that's accurate and is of help to you.

[northerngirl]

Mom has never had fasciculations, Yet her's started with her left arm, she could not move her ring or little finger, then up it travelled, then her right arm. now her legs and her speech. Me, It's my tongue, I read, (Ihave to laugh while I wright this one!) One of the tests is to see if you can still wistle! so yes in the middle of the night when I wake up you know what I try to do!, good thing my husband is hard of hearing and a deep sleeper! LOL! also they check if you can touch your back molers. Which I can do. I guess I will Know more on the 19th. I had the dr. check my thyroid, and my B12 because those are both sympyoms if there is a dificency. They both came back ok. The dr. put me on clozapane for my anxiety over this. Then I Googled (yes I google tooo Much!:-D) that some peaple get slured speech and musle twiches. So I stopped taking it, evern though I only take it at night. So needless to say I did not sleep. And am a total mess with anxiety again. Mom was officially diagnosed with als Tuesday. (no supprize). Hopefully all I have is stess.

[wright]

I can see how and why your symptoms would worry you . . . BUT . . . let's look at this thru a pure probabilty perspective. You said your mom was just diagnosed with ALS . . . a rare disease, with symptoms that are mimicked by many things. What do you think the chances are, that you have ALS at the same time your mom does? The chances must be astronomically small. I am going to assume that the condition of your mom has your very worried and anxious . . . is causing you to lose sleep and not eat. All of that is obviously going to cause all kinds of abnormalities in your body. I too am sleep deprived, not eating well, worrying, etc. I feel twice my age at the moment . . . and just six weeks ago . . . I felt half my age. There is definitely something wrong with me; something is causing me to denervate . . . but the time span for which it has happened and the sensory symptoms I am suffering . . . and I quote my neurologist and another neurologist friend of mine who used to practice at the John's Hopkins ALS clinic . . . "There is NO WAY you have ALS with your symptoms." But for some reason, my perception of things overrides the reality of the situation. Unfortunately, that is the way many of us think when it comes to things like this. I too am a worrier. I too am anxious about the possibility of having ALS, despite being told by two neurologists that I don't have it. I know exactly how you feel . . . and it is not a very pleasant place to be. What I tend to do, is focus on the symptoms that point to ALS . . . and I don't look at the other symptoms that point away from ALS. I am scheduled to see a third neurologist at Ohio State in about a month. If they tell me that I don't have it, then I will finally accept it . . . I hope. I think you need to step back and look at the whole picture and believe what your neuro tells you at your appointment. I wish you all the best.

P.S. Just as a note: even if I don't have ALS . . . I will not leave this forum. The people on here are beautiful and I will do all I can to help you all, just as you have all helped me through this most difficult time.

[mamaoftwo]

It has roughly the same incidence as MS but we don't hear people describing that as a very rare disease. I have 3 friends with MS and know of 2 people that died from ALS (outside of this forum obviously). Just because ALS patients typically die within 3-5 yrs of diagnosis does not make it rare - sure it changes the stats as to how many people at any one time have the disease but it doesn't change the incidence.

[northerngirl]

Thank you WRIGHT for understanding!
Yes it probable is stress. but something really funky is going on and it seem consuming.I wish you peace, I know you understand that one.

I wish one of the icons were a flower, I would pick for you right now.

[mamaoftwo]

Hey Northerngirl - I hope you didn't think that my question about ALS being rare, was in any way an indication that you could have it???? I just get miffed when I read all these posts saying its such a rare disease when it is not. But Wright is right! Statistically speaking, the chances of you and your mom having it at the same time are - well tiny to say the least. It is much more likely that you are having sympathy symptoms as it were. There is one poster here (who is a CAL) who admitted that she had ALS type symptoms while taking care of her PAL.
Re the meds, I had twitches on ativan which is in the same family. You asked what they feel like - well mine are like little tickles under the skin (make sense?). Some I can see (rarely), mostly I can feel something odd and cannot see anything at all. What you are describing could also be parathesia - which is sensory and typically not related to ALS.

[northerngirl]

Thanks Mamaoftwo

I have been on Clonzapan for about 4 weeks now. I only take .5 mg at bed time I can take up two 6 pills a day. Idid not take it last night because I have a cold an took niquil instead. (because I have been feeling so weird). So needless to say a had a horrible night sleep, twingy things all over and today was just a rough day. My brother phone to see if I was going to take to Mom to make sure her affairs are in order and "we" needed to talk to her about puting her in a care home evetually. He figured she has 3 to 4 months to live. (Am I rambling now?) I told him that I felt that because Dad does all the primary care, (she has home support everyday twice a day or as much as she wants) That I really feel it's thier discion. I also told him 50 % of pals choose to stay at home. Secondly, I am hard pressed to tell the difference as to when we will loss her. could be pnemonia tommorrow or 2 years from now. Hmmmm yeah I get myself stressed out.
Thanks for listening.

[AHands]

Is the muscle weakeness such that the limbs are disabled? Is this a perceived weakness, how is this diagnosed?

The limb doesn't become disabled overnight, but, from my experience, you can SEE the atrophy or wasting--there's places that should be fleshy but are now depressions. Since progression is asymmetric you can demonstrate the wasting by comparing right to left, but you'd recognize the wasting in your own limb without needing to compare.

[northerngirl]

Hi all!
Had my EMG's yesterday, the tech was great he told me they had a technical name for me "Faker" :-D. Told me that I was ready for the Olympics. Really cheered me up. He was a visiting tech. he said that out of all the test he does for suspected als the positive results run about 10%. And he said he felt he worked with Canada's top neurologist. Then I met with the Neurologist. She was the one that first suspected Mom's ALS. She said it was probable stress and if I did not slow down and look after myself I will have a nervous break down. Hah! they are always wrong I already did that last month I am much better now!:-D I do feel bad about Mom I wish I could do more for her. She thinks I am an angle but I wish I could do something to improve her. She had a respiratory tech come in to day, we are trying to get a pi-pad to help her with her breathing. The lithium is a diuretic so going potty all the time is sure a lot of extra effort for her.
Oh well we are calling it her magic pill, hope it slows the progress down.

[AHands]

great news, "faker"! :-D Congratulations! Maybe some of your good luck will rub off on mom too! :-D

[CindyM]

Good news! I like the 10% probability, too. As for the nervous breakdown, LOL, the next time you schedule one let me know and I'll have one with you! :-D CIndy

[vmd]

northerngirl:

Relax and treat yourself to a good restaurant!

[Al]

And a good Merlot as well, It is good for celebrations.
AL.

[Icanmanz]

So is Zinfandel!!! LOL! (In a CHILLED glass, of couse!)

Irma

[northerngirl]

Thank you all!
Now my feelings on Resveratrol, which again I quote as having 640 mg per 8 oz, of red wine have some very promising effects on ALS. ( Please Google that!) So Yes Red wine was the order of the day But in truth I had two Margarita to celebrate! (Doubles)Now that I had my 3 glasses of wine tonight I feel a little like rambling so bear with me and find the humour! :-D I have 4 children triplet. 3 beautiful daughters 7 and the cutes charming son 5. While I went through 3.5 months of familiar ALS fear. I told my husband that when we went to Florida for spring break I wanted to get my scuba certificate. He has wanted that for some time. Now that I know I might be around for a few more years he is getting irritated over my fear of getting eaten by a shark. It did not seem to matter a month ago but now.............. hmmmmm, more red wine!:-

[Al]

Scuba diving is great. I've seen sharks in Florida waters numerous times but they were only mildy curious. If you get bitten by a shark in Florida it is usually wading in less than 5 ft. of water. You have a better chance of getting ALS than being bitten by a shark. Especially if you're a diver.
AL.

[givenin]

Not sure if putting in right spot bit of a panic or trying not to, My husband has a red area on his upper left ankle that is causing him much pain. I am pretty sure, very sure he hasn't banged his leg on anything but still a possilblity transfering from chair to wheelchair that I missed. Advice please on how serious I hsould be reacting, have family here that may be adding fuel to fire. Last experience at emerge was very bad so don't want to go there if at all possible for something not shall we say hot. Gp unalvalible at htis time.

Trying to check on line but of course when in a hurry never find what I am looking for so came to the pro's for first class info.

[Al]

Hi givenin. How is that spot today? Was the area around it warm? Does he have foot swelling normally and was this different. Sorry no one got back sooner.
AL.

[givenin]

Yes the area was warm, pretty warm and the redness was larger than an egg, homecare seems to think spider bite. My concern of course is his lack of mobility and trying to get him to keep his legs elevated for awhile durring the day dosn't always work. Had family here at the time and they have a knack for over drama so made things more difficult to deal with hence my panic feeling. Normally his feet and ankles are very cold with swelling which has been there for over a year. It is still tender but not as painfull as it was that first day so mabe it was a bite. keeping watch.

Thanks for getting back.

[AHands]

is it a rash? i don't want to be an alarmist, but if i see a rash after taking a medication, the first thing i think of is the possibility of an allergic reaction, which can be quite serious.

otherwise, somebody mentioned an all-over rash and another person posted a response here: http://www.als.net/forum/topic.asp?TOPIC_ID=2399&whichpage=2#17009

another poster mentioned getting a face rash. she's a nurse, and didn't seem overly excited about it--maybe my fear of allergic reactions to medications is exaggerated?

[givenin]

No I don't believe it is a rash and he is not taking anything new. It is causing some more pain today, he says more like a lump than pain on top of the skin. and very warm to the touch. Have asked the doctor to visit ans check it out.

[Al]

I hate to mention blood clot but that was what I was thinking.
AL.

[givenin]

That was my fear to, funny he has spent most of his life traveling on planes for long hours and then to get that problem now.

Not funny.

Will let you know what the Doc says.

[CindyM]

Yes-please let us know what happens!

[givenin]

Okay how do you spell Flabitasis, my spelling stinks. That is what the doctor thinks it is. Elevate and treat with asa and cold compresses which we have been doing and now this evening his right heel is very painful but can not see any redness or feel any heat from it.

Has anyone else here had this happen to them?

[AHands]

Phlebitis -- blood clot

http://en.wikipedia.org/wiki/Phlebitis

(That's what Al was thinking!)

[givenin]

Thanks for the spelling and site. Doctor felt it was only a surface vein affected most likely caused when moved from recliner to wheelchair and I hope she is right, she sort of brushed it off lightly as well as saying that Lithium side affects were nothing to worry about which bothered me allot. We also have a surgen who is very willing to put a peg in saying he doesn't have any concerns about his breathing, I bet he doesn't that would be the Anesthesiologist responsibility not his and the Anesthesiologist isn't keen on doing it. I am afraid my husband has left it to long for a feeding tube.

[AHands]

...saying that Lithium side affects were nothing to worry about...

I THINK Lithium side-effects are severe at serum levels slightly higher than the therapeutic level for bipolar. The therapeutic level for ALS is, I believe, only half that for bipolar, so there should be a good safety margin, if you get checked often, drink plenty of water and maintain your salt (sodium).

[northerngirl]

Lithium level should be 0.4- 0.8 that is a low dose. Shock comes arounds 2 I read some where. ALS Vancouver said she is checking lithium levels, electrolytes and kidney function monthly in her patients. How the lump doing?

[givenin]

My husband drinks lots of water and is now drinking Gaterade as well my concern is his renal states arn't good and just because you drink lots of water dones't mean you are retaining proper fluid levels. We will have to get that checked out. His paln is to start on the Lithium for a couple of months then take riluzole for a couple then stop that and stay on the lithium, no feeding tube. The forum he is on has people saying that they have noticed a marked improvement in thier health to the point that they are claiming that they can walk where as beofre they couldn't SO are saying it is reversing the ALS progression. Now I have tried to read as much as I can on this one and have not read anyone here stating this and I am trying hard not to be a negative Nancy on this for him so am keeping my mouth shut.
His legs are much better and am taking extra care when moving him not to bump anything for fear of causing it again.

This coment about reversing the progression was said to happen after about 3 weeks on the Lithium.

[CindyM]

I am not sure if the progression is reversed, and here is my reasoning: although not DX'd I have trouble climbing stairs, which is one of the things that lead my local Doc's to suspect ALS. Well, I passed the EMG and such so the ALS clinic said we should do anything that makes my symptoms more bearable. They noted I'd had a sleep disorder and recommended I go back on the CPAP. Bingo- I felt stronger. Stairs were not so much of a problem, sometimes my gross motor skills came back too.

Now I am having trouble with the CPAP. I have signs of CO2 collecting in my bloodstream. SO it is back to the sleep lab for me, and while waiting I went off the CPAP. Only 2 days off if and stairs are a problem, as is getting dressed/undressed while standing, since I cannot lift my leg very high. And I have completely lost my gross motor skills again, so no jump rope for me! :-D

I suspect the lithium is doing the same for our PALS. It probably makes them feel stronger, but the condition is not "coming and going" or "reversing itself." I think it helps the muscles cope a little longer, which is a good thing.

But we still need a cure.

Anyway, this is my best guess on why breathing properly, or taking lithium, seems to help for awhile.

[givenin]

I knew I would get a level headed responce here and it makes perfect sense what you say, Thanks.

[ZenArcher]

Let me say that I believe lithium has potential as a treatment otherwise I wouldn't be on it. Having said that I am also a proponent of facts. The initial study done in Italy needs backup studies to prove it but the only thing it tested for was a 6 month or greater extension of life. There have been a few people claiming improvements either short term or ongoing but these are claims only. There is no substantiated facts to back them up. I do not mean to say that it isn't possible it may be but as of now there is no proof. Lithium is an experiment. Granted it is an experiment with one study behind it and a fair amount of science but an experiment just the same. I like everyone else hope this is the miracle drug but we have to look at this objectively otherwise we endanger ourselves and set ourselves up for disappointment.

[CindyM]

Right, Jeff. I never read that lithium was being touted as a cure, only a treatment.

:-DAnd thanks, Givinin, for calling my ideas level headed!

[vmd]

Cindy:

I am curious as to what signs you see that lead you to suspect CO2 levels rising in your blood? Also, do you or anyone here know if there are tests one can do at home to have a rough measure of FVC potential? I know that without the necessary diagnostic devices it's only a rough approximation, but perhaps there are such tests (ala blowing into a balloon, etc.).

[CindyM]

I feel short of breath - sometimes even with the mildest of activities, like walking across a room or getting up from a chair.
I feel light-headed and have a roaring headache that does not go away with painkillers.
I am nauseous. This is the symptom that makes me cry "uncle!"
IF it goes on for days, I get confused, but that could be due to the headache wearing me down.Interestingly, I do not have these symptoms if I stay off the CPAP. I've used a cpap for years due to obstructive sleep apnea, which gets worse as I get weaker so they have to keep ramping up the cpap, hence the new issue with too much CO2.

Today is the 4th day I have gone without the cpap. Now my "neuro-muscular" symptoms are visible to all, and people are starting to ask me what is wrong. I always said that I believed some of us won't get DX'd until the average person on the street sees that something is wrong, so I am not exactly happy that this phase has come to pass.

I go back to the neuro mid-March. I am hopeing that things settle down again like they did once before. If I am still having trouble, I guess I will take him up on the offer to repeat the tests.

Sorry for the rant. I'm in a bit of a foul mood because yesterday I was too weak to cooperate with a simple bone density scan, which they run on us old ladies just because they can. The technician had to lift my legs for me and position them for the test. I know in the grand scheme of things this is not terrible news-after all I can still walk and drive to work.

:-D I am going home and I'm going to pour a glass of merlot and watch TV until my eyes gloss over! THat's what I am going to do!!:-D

[Al]

I can relate Cindy. The Neuro noticed slight fasciculations in my tongue yesterday. I was not impressed to say the least. Maybe the Lithium will help but for now it'll be Merlot.
AL.

[vmd]

Sorry to hear about your symptoms, Cindy and Al. I am also starting to notice more limitations as time goes by.

[wright]

You asked about how you can measure your FVC at home: there are inexpensive, mechanical, portable spirometers that should be available to you. Very simple devices but fairly reliable . . . and if all you want to do is track changes, then they should work just fine. Ask your doc about them and I'm sure he/she can get a hold of one for you.

[vmd]

thanks wright, do you need a prescription?

[teaguec]

Larry was an active, extremely healthy man until last fall. He had retired from the fire department where he was a captain, then worked to improve our 70 acres. After being retired for several years he decided to seek a job in Alaska. This was more of an adventure than a need for a job. He worked there for over 2 years (working two weeks and home two weeks) at a gas well site. He started having some difficulty with extreme fatigue, stumbling, slurring of speech and his voice was weak, and he was choking at night. He saw his PCP who referred him to an ENT. The ENT gave him an inhaler and referred him to a Gastroenterologist who diagnosed him with GERD and he was given Nexium which helped.

Last summer he had a yard work day. It was very hot, and he worked extremely hard, and got too hot. When he went back to Alaska he notice a round raised area on his leg. He continued to feel crummy. He notice that his muscles were getting weak and smaller, he was still dropping things and stumbling. His PCP referred him to a neurologist who did an EMG on his arms and declared that "Your problem begins and ends at your wrists. You have severe carpal tunnel syndrome and it's in both wrists." We thought that was a little strange, but hoping that his problem was that simple. I've read some posts that mentioned doctors' EGOs. This doctor had pooh-poohed my husband's questions, would become irritated if questioned, and generally treated him like he was a hypochodriac. I urged my husband to get a second opinion, but he didn't right away. Only after surgery on both wrists after which he continued to have other symptoms did the neurologist order another EMG at which time his arms as well as his legs were checked. We then were told that he had motor and sensory atrophy and "It is all over". Then, I insisted that we see someone else. I had had it!

Our new neuro. referred us to an infectious disease doctor who ran every conceivable test. All were negative. My husband's twitching, burning muscles continue to get worse. They have spread from his right arm to his left leg and now to his left arm. He gets tired very easily. Activity seems to worsen the twitching and burning. He suffers from bouts of anxiety for which the doctor has prescribed Zanax, and it helps.

The new neuro has referred him to the University of Kansas Medical Center for further tests and (we hope) a diagnosis. We'll be going on the 19th. I've read everything I can find that I think is legitimate, and have tried to learn as much as possible.

I'd be grateful for any insite you could give us.

Connie

[CindyM]

Hey Al- merlot works fine, though LOL I doubt it will make the fascicualtions on yor tongue go away. Actually I hate to see any progression in you. Progression is any of us stinks but you are our rock. So it stinks more when it is you! :cry:

Take care, my friend.

[CindyM]

Hi Connie- sorry for what is happening to your DH. I am glad you joined us, however. There are a bunch of caring folks around here and a wealth of information. Regards, Cindy

[Sammantha]

Hi AHands, i like to call them divets... Like those little pieces of missing field on a golf course. Its like you get the cramps, then awhile later you get the the twitch and after a month or two of on and off twitching there is an indentation or divet. That is the hard part, knowing that where you get the twitching will eventually change the shape of you back leg or arm, even jaw/face. I keep joking with my husband that i am one more facial cramp from having a face lift. Its a positive point that i now have shoulders, i always had big arms and neck with rounded shoulders, now my left one in boney and you can see my collar bone........ it does not look gross it actually looks good, you know skinny is in!!

[northerngirl]

Mom had the test done where we taped the O2 monitor to her finger for the night. 2 nights in a row. Her O2 level dropped down to 80% during the night. She did that at home. Monday she went to the respirologist (out of town) when she got back Tuesday the Medigas guy phoned saying he was coming out to put her on O2. He brought a condenser(?). He said he had also got a requisition for a Bi-Pap from the respirologist, but It would be a few days before he got one for her to try. I was taking to the ALS clinic and mentioned the O2. Then the questions were flying. I am still unsure of who ordered the O2. The clinic said this is very unusual for ALS. I understood (I could be wrong) the high O2 causes higher co2. Mom wakes up a night (normally) not being able to breath. She had Dad take the O2 off at 3:00 in the morning. She gets hot especially her head it gets very hot. She makes dad open all the windows (It's cold in Canada!) He gets grumpy. Anyway, they told her not to take the O2 any more and a different out reach program is going to set her up with a Bi-pap for no charge. (They also said they do not use c-pap for ALS). But when the medigas guy was out he told her she has to sleep with O2 even if she napped because she could die if she didn't. soooooo.... tonight no bi-pap, O2 won't work and I wonder if she's as worried as I am.

I had no sleep last night, the craziest day today, sick kids, and promised myself no red wine tonight, that may of been where I went wrong! lol! won't be doing that tomorrow!:-D

[wright]

I'm sure the doc can write you a script for one but I'm pretty sure you can simply go to a medical supply store and get one.

[wright]

Sorry to hear that you and your husband are going through this.
Questions for you: is the burning sensation felt more on his skin or his muscles? Is he in any kind of pain or do his limbs feel like someone has put a really tight wrap around them?
His symptoms don't really sound like ALS (ALS does not typically present with sensory symptoms and it sounds like his symptoms came fairly suddenly) . . . but more like CIDP, which is treatable. It could also be fibromyalgia, which is also treatable.
I think it would be best if you did go to an academic institution and get a third opinion. It sounds like the first two docs weren't very good.
Take care

[CindyM]

Northerngirl: give up the red wine? LOL have you learned nothing from Al and I???

Seriously, I think the respiratory folks might not be skilled with ALS. CPAP and oxygen will not help as it is the chest muscles that are weak, thus the air does not get expelled totally. I agree with Mom- time to get in touch with the clinic. Can you email her ALS doctor? Where I go, they answer emails faster than phone calls.

[kmgy]

I agree with Cindy, the O2 is not good for als. the neurologist put my father on o2 prior to his clinic visit, and it almost killed him. to much oxygen going in and not enought co2 coming out. he passed out, we took him to er, etc. when we went to als specialist, we were told no 02.

[teaguec]

Thank you for your reply.

I wonder why Fibromyalgia could not be diagnosed in Tulsa if that were the case?
Our first neuro. was a big dissappointment, but we were impressed by the way the second one listened and has referred us on when he doesn't have "the" answer.
I feel as if the infectious disease doctor has eliminated many possibilities. Since we live in the country, Larry was checked for tick borne illnesses. He did show some exposure, but that didn't explain his symptoms. However, the doctor did give him a 3 week regimen of Doxicycline.

What is CIDP?

Larry says that the burning feels as if someone has poured hot water on him. He doesn't feel a tightness, but feels like his arms are alive with electrical impulses. The twitching can be seen in his arms, legs, and feet. It seems to never completely stop, but is sometimes not as intense as other times.

[teaguec]

Is an abnormal EMG indicatiave of Fibromyalgia?

[givenin]

Hi Northergirl
I don't know who the guy is but he is very wrong to do the o2, your mother needs a Bi-pap and it can be delieverd the next day. We have gone through 3. Contact the Provincial Respiratory Outreach Program and they will set you up. We just had Jillian here setting up my husband with what they call a nose pillow and checking his settings. Also he hasn't been able to lay flat for awhile as it was hard for him to breath he now sleeps in the lift chair. If she wont use the Bi-pap it will shorten her life and when she does get on it she will notice headaches are gone and will feel more alert. There is no cost to the Bi-pap or being delivered they are very helpful.

Don't stop the red, I have been enjoying a nice Okanagan Merlot called Naked Grape.

[AHands]

... That is the hard part, knowing that where you get the twitching will eventually change the shape of you back leg or arm, even jaw/face...

Personally, I haven't seen a close relationship between fasciculations and atrophy. My left hand is all but gone, yet most of my fascics are in the left arm. Over the past several months my right hand has declined a lot, but I don't recall fascics there. Does your wasting closely follow the fascics?

[northerngirl]

Hi Givinin!
Naked Grape! bottle don't come in a 1.5 L :D
The Vancouver ALS clinic are awesome! They had everything sorted out by today. She said the $2,500 Bipap Medigas would sell us would not be as good down the road as the $7,000 that Prop (Provincial respiratory outreach program) will supply for free. It comes tomorrow and Evelyn (?) will fly in Monday to get her going. And was bringing a cough assist, What the heck is that?

[teaguec]

I really appreciate all the information on this website, but I must confess that I feel overwhelmed by the ambiguity of symptoms and experiences. I was soooo hopeful that we would come back from Kansas City with a definite diagnosis, but after reading of so many others' experiences now realize that may not happen.

We have 12 days to wait for our appointment, and each day seems longer!

My husband is incredibly emotional. He's a six foot, 200+ lb guy, but has a great big heart. However, these raw emotions are not typical for him.

We have many, many people praying for us. Our faith is great, and whatever comes we can face with His help. He has taken care of us in our 42 years together, and will forever. We have been blessed to have good health, healthy children and grandchildren. If it is our time for leaning more heavily on His strength we will. God always knows best.

My husband is not afraid to die, but does fear the unknown.

[givenin]

That's great! Evelyn is who came to us first very nice woman, she will get you set up in no time and there is a # where you can call for help anytime. The cough assist is to help with the mucus build up in the throat that gets to a point where a PAL dosn't have the energy to cough it up. It's a bag like device that you will use with your mother to help her do so. My husband won't use that's another story. Do you have homecare in yet? Our Community Care Nurse has been awsome in her support and knowledge of ALS and pallative care with the medications and such. You should notice a nice improvement in a day or so with her on the bi-pap.
There is also a Okanagan wine called Cat Pee on a Gooseberry Bush, yuppy lable for a nice bottle of wine.

Frazzeled
Sorry you are here and sorry you have to wait so long to know. The first Neuro we saw knew right away, I'll never forget her face but still sent us to 2 others to confirm her diagnoisis. Gain as much knowledge as you can it will help.

[northerngirl]

frazzled,
One day at a time! Have a good day today. Yes it feels like a neuro apt is days x 3 away waiting, but when I had mine 2 weeks ago the tech told me that the people he checks with ALS symptoms only 10% actually have it. But don't let the stress give you a heart attack in the mean time, ;) . My husband's a big guy too but the bigger they are the bigger their hearts and they hurt big it they think it's breaking. It normal to be scared and he is probable exhausted from the worry.


Givein,
Cat pee on a gooseberry bush? One has to do what ever works!
Mom get homecare 3x a day. The BC ASL society sent a bunch of stuff today so I am on mey way to check it out. Try and have a great day today! (\PS I love the little wine and beer store there they have a great selection!)

[CindyM]

Northerngirl is right, Teaquec. The not knowing can drive you frantic! Those stats about 10% actually having ALS are very hopeful, though. From what I see around here, PALS get used to the idea they are going to die-aren't we all- but as a group they seem happier emotionally than, say, 4th stage incurable cancer patients who have the same timeframe but terrible pain. Please let us know how the appointments work out! Cindy

[givenin]

Cat pee on a Gooseberry bush, painted turtle, naked grape and Rigamarole Red are some Okanagan wines that are pretty tasty, trying them all,(not all at once!) Husband is pretty good today on his Lithium and feeling more postive than in a long time, feels good to relax and smile.

Hope all had a good day.

[northerngirl]

Nicely said cindym,
My father in-law passed away suddenly of a heart attack. We were so blindside it was crazy. His wife never got to say anything, his buddy a retired doctor came to visit after he had a great day with friends and family. Doc suggested he went to em erg just to make sure everything was OK with a mild chest pain. His wife had gone to bed, the doc phoned my husband, who decided to drive in at midnight to the hospital, they told him to go home, his dad would be OK. The nurse came out after him 1 minute later and caught him and 20 minute later, he was gone.

I know ALS is hard for my Mom, but I am treasuring these day. Most of the time she will still laugh. We can chat for hours. She is not afraid of dieing she has her faith. But she is a mom and she worrys about us kids missing her. And we will, but we are a little more prepared.

[CindyM]

Years ago my Dad in Law said goodnight to his son and went to his little apartment to read the paper and watch, as he called the Red Sox back then, "The Bums." Next morning they found him propped up in bed, paper in his lap and TV running. Everyone who knew Roy said it was the prefect way to go for him: reading about the Sox and watching them on TV.

But when I saw the shock for the family, I wished they’d had time to prepare themselves.

Now I am watching a family help a beloved member with late-stage 4 cancer. The pain on their faces every day is hard to see.

I guess there is no good way for any of this to happen. It is a transition that everybody must make and maybe the best we can do is hope we can relieve a little of the emotional and physical pain for all concerned.

[northerngirl]

I guess it comes down to who is it good for?
Remember the movie Grumpy old men? they would talk about someone that died of a heart attack and would answer "Lucky Bastard" . My husband and his side of the family you can not talk about death, or wills or anything, like it might not happen if you don't acknowledge it. My family we talk and laugh about it and we even cry about it. But we acknowledge if you want to play the game of life you got to pay in the price. So live it and love it. I don't know but maybe we were brought up with religion in our family and if you think about it you celebrate Jesus dieing once a year, and mention it ever Sunday. So it was not a bad thing we embraced it. Now that I think about it maybe I should start going back to church:)

[teaguec]

I've had to say goodbye to a brother who died at the age of 57 from colon cancer, my mother who died of lymphoma, and my dad who died of a combination of old age and a appendectomy at the age of 87. These people (as well as many others who have gone on) will always have a possitive influence on my life. My hope is that when I'm gone the people I love will carry a part of me with them--a good part. :o)

As for my husband, here's what the neurologist had to say about his second EMG.

Interpretation: Prolonged left Median and Ulnar latencies. Diminished bilateral Tibial motor amplitudes, Low left Median motor conduction velocity. Diminished bilateral Sural and Perneal sensory amplitudes. Absent left Ulnar sensory response. Needle test reveals widespread denervation in left arm and bilateral lower extremities.

Conclusions: This study is suggestive of widespread motor and sensory; motor predominant; generalized neuropathic process. Sensory abnormalities can be from an independent superimposed process. If felt clinically indicated, aggressive search for etiology for a pure motor neuropathic process should be undertaken. This study also reveals left carpal tunnel syndrome.

My husband had carpal tunnel surgery on both wrists last fall.

I'm not expecting a diagnosis from anyone here, but I am curious to see if someone could lend some insight based on this report.

Connie

[teaguec]

I couldn't find a sticky not at the top of the page that would explain an EMG.
Connie

[teaguec]

Is umn and lmn determined only by observation or is there a test that will indicate whether you have one, both, or none?

Also, my husband's Motor Nerve Conduction results show Latency Difference from 1.0ms to 12.7 ms on different parts of his legs and arms.

His Sensory Nerve Conduction results show Latency Difference from 0.4 to 3.5 ms on different parts of his legs and arms.

His Needle EMG Examination shows positive Fibs, + Wave, and Fasc. A couple of areas show "Few" Volitional MAUPs.

I'd appreciate help in understanding these results.

I'm planning to bug the doctor's for explanations from now on. I'm just learning what questions to ask.

I know I'm impatient, but "thanks" for putting up with me.

I'm a school librarian who is retiring this year. My husband and I will both be 62 in August. We're typical of many who have put off those world travels and major improvements on our home until after retirement. Those things seem really unimportant now.

Connie