Newly Diagnosed

[sadiemae]

Collecting unemployment while waiting for disability is a tricky subject. On unemployment, you have to state you are willing an able to work, and with disability, you have to state you are unable to work. You are allowed to earn a certain amount each month while waiting on disability, I believe it less than $1000 a month

 

[dbltree]

Laurel posted recently about a web site that is helpful.

Check out e Neuro info dot com

Thanks again for that link, very informative...one thing I had been wondering about is yawning? Not sure it's excessive or abnormal but I do seem to yawn more then I used to?

Also explains(in link) why my right hand and right foot get colder, easier/faster then my left side

 

[dbltree]

My wrist is getting much weaker, lifting the coffee pot with my right hand is barely doable. No spasms so far but definite cramping in my hand and forearm, even holding my arm outright to type these words causes cramping type pain in my arm. I need to learn more about stretching exercises.

So far weakness is all on right side and mostly in my hand/arm, less so in right leg, no problems swallowing so far so I am enjoying eating/food while I can!

Working (albeit slowly) is for me the best medicine and helps me keep a positive attitude...sitting around "thinking" is my worst enemy.

One degree here in Iowa this morning....:shock:

 

[dbltree]

I decided to get my mercury fillings removed asap, no illusions that doing so will "fix" my ALS but at least may not exacerbate it?

Found it hard to lift a bottle of soda today but...grateful I could still drink/swallow it.

It seems odd that a dying man can not share his life thru a pictorial journal link here but if any PALS would like something to read my journal is called "the life and times of dbltree" in the journal section of out reach outdoors.

Thankful I can spend my last years in my peaceful Iowa home...watching deer graze in the yard....

 

[dbltree]

Lately the twitches have moved into my neck and throat area, no problems yet but it is of course unnerving. Major weakness is still in my right hand/arm and very slowly moving up my forearm.

I understand the problems of excessive saliva when one can not swallow but over past few weeks (maybe more?) I have noticed excessive salivation which I have no problem swallowing? Seems odd and unrelated to ALS but I would like to hear from others regarding this subject?

I learned that mercury poisoning can cause this (no amount of mercury is safe) and a friend who suffered for a long time (falling/weakness in limbs etc.) and was being tested for MS had her mercury/amalgam fillings out recovered within weeks. She gave me a couple books to read which some of you may find interesting.

"Dentistry without Mercury" and "Solving the Puzzle of Mystery Syndromes"

We can only guess to the causes of ALS but it is interesting that mercury has been found in the brain of a gentleman who had his fillings removed 10 years prior (despite claims that mercury fillings are safe).

At any rate, if by some chance the mercury fillings are exacerbating the production of saliva I plan on getting them removed and replaced with composite fillings.

Any problems with saliva if you do not yet have problems swallowing?

 

[here4her]

Just wanted to share this little bit of info for early stage patients who may read this. My wife is newly diagnosed with als, but has been taking regular doses of just plain aspirin (325mg) along with a mag/ox for the cramps for several months. This has been working beautifully so far, allowing her to sleep reasonably well, and maintain with some energy through the day. It is still early for her. Most of the blogs we've read seem to be from more advanced people.....but for the newly diagnosed, this is worth knowing. She takes 2 aspirins and 1 mag/ox (magnesium oxide) 4 times a day (every 6 hours in a 24 hour period). Recently, she has added an extra set of 2 aspirin (without a mag/ox) between the regular 6 hour doses. This seems to keep the coughing/phlegm under control. Her voice is also weak, and this helps. I know it sounds simple, but it works.....especially considering that there isn't much else available at this time.
The mag/ox is available OTC, you have to ask for it. But it's cheap (especially the generic version), and doesn't require a prescription.

 

[Omalley15]

i was diagnosed 09/2012 i got approved for veterans benefits in 30 days and ssdi in about 60 days dont delay apply today.

 

[dbltree]

Thanks much for the advice here4her I'll give that a try and that's encouraging to know it didn't take to long for SSDI to be approved as well!

 

[here4her]

I hope it helps you, dbltree, and any others who may want to try it. The aspirin are great anti-inflammatory medicine, which is part of this disease. The mag/ox really helps her with the cramps (which can be very unpleasant). She still has the fasciculations and twitches, but the cramps are pretty much under control, as long as she doesn't miss a dose. I realize that everyone is different. You may have to experiment with the dosage. But her Dr. said that she could have as many as 8 doses, 2 aspirin each, in 24 hours....which would be 16. That sounds like a lot, but as long as your stomach can handle it, he said it would be o.k. to take that many. My wife doesn't take the 12:00 midnight dose because she is asleep. So she is 2 aspirin short of her maximum allowance. She does get up at 3:00am for that dose.
Her schedule is aspirin and mag/ox on the 3's and 9's, with the extra dose of just two more aspirin in between....on the 6's and 12's.....give or take 30 min. or an hour, according to what is going on. If she misses by two or three hours, she begins to build up phlegm/congestion and starts to cough.....sometimes quite violently (which scares me). So, we don't miss any doses if at all possible.
The reason I post this is because I did not see anyone mentioning aspirin or mag/ox in any of the other blogs.....which is amazing to me. Why not try this, people? It's cheap and easy, and if it doesn't work for you, well, you're no worse off.

 

[dbltree]

She still has the fasciculations and twitches, but the cramps are pretty much under control, as long as she doesn't miss a dose.

Good info, I have seen the mag/ox mentioned in a few posts and certainly worth trying. We all appreciate ideas that might help us as well.

Twitches were terrible last night, kept me up despite Motrin PM, seemed like every muscle in my body was rolling! Why they are so bad at night versus when I am up and active I don't know?

 

[here4her]

There are many people working hard to understand this terrible disease, naturally. UCLA and Harvard are two of the most active places right now. My wife suspects that the reason for the difference in daytime and nighttime twitches is due to the way our metabolism works. Your muscles normally try to build and rejuvenate during the day, while you are active. At night, not so much.....which is when the disease kicks in more prominently. I am not sure that there are studies to confirm that idea, yet, but it makes sense to me.
She is also a scientist, and understands these scientific papers (I don't, unfortunately.....but she explains them to me). She gets lots of information through PubMed, but says that you can access info through a publication called ALS Journal. I am going to check it out myself.

 

[dbltree]

I started on the mag/ox and B12 sub-lingual (if that is the right name for it?) and I also read that caffeine is not helpful, the night the twitches were bad I had a rare cup of coffee with my wife around 6:00.

No idea if the B12 will actually help but almost no twitches last night.

Odd as it may seem, I have almost no muscle pain when/after working in the timber It seems that sitting/being inactive causes soreness in my forearm and thigh/calf muscles? After sitting (such as at Dr office), my right leg is stiff as a board when I rise and try to walk but no problem at all walking up and down steep hills?

Couldn't turn the doorknob and the coffee pot is almost to much to handle now....

 

[dbltree]

Twitches are a little more "subdued" since taking the B12, my right bicep felt like the Harlem Globe Trotters were practicing in it! :shock:

Can't sleep on my right side (weak arm) anymore, causes too much pain. My right leg still feels relatively strong but when I sit and there is any pressure on my thigh muscle, it feels like " worms" are crawling at that pressure point?! Get's sore and uncomfortable....may have to find something else to sit on...any ideas?

 

[dbltree]

I'm not sure which was harder...hearing the news from the first neuro or the second...at least I had some small shred of hope that the first one was wrong. Oh well...next move for me is the University of Iowa ALS Clinic and to get the SSDI process started.

I had to do some speech testing and failed some of that but still swallowing food ok for now. Fingers in right hand stiff but still same amount of strength (albeit it small), starting to get tingling and numbness in left hand thumb/forefinger. Still walking although very stiff legged after sitting.

Every day is a blessing and thankful for each one!

 

[vickim]

You have a great attitude. Keep your chin up, there is life after diag nosis. Hugs.