Now what is going on with me?

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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
 
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!
 
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
 
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Hey VMD

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.
 
Hello Connie

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
 
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.
 
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.
 
Fibromyalgia/CIDP?

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.
 
One more thing

Is an abnormal EMG indicatiave of Fibromyalgia?
 
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.
 
... 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?
 
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?
 
Frazzled

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.
 
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.
 
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!)
 
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