Now what is going on with me?

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AHands

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...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

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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

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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

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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

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

ZenArcher

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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

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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

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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

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  1. I feel short of breath - sometimes even with the mildest of activities, like walking across a room or getting up from a chair.
  2. I feel light-headed and have a roaring headache that does not go away with painkillers.
  3. I am nauseous. This is the symptom that makes me cry "uncle!"
  4. 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

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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

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

wright

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To VMD

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

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thanks wright, do you need a prescription?
 

teaguec

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Husband may have PMA or ALS

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

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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.
 
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