Just diagnosed

[brendapals]

Hey sand,

Well, yes, I think it is a really good thing that my boys keep me so busy! I wonder if that's why I fell asleep on the couch at about 9? hahahahaha

Anyway, I told my hubby yesterday, I don't know if it's the lithium or the Rilutek making my speech seem so much more deliberate. I have an extraordinary amount of saliva now also. I emailed my neuro team this morning, so we'll see what they say.

I know what you mean about the meals thing. I have always been the type that would try my best to help someone else. I find it very hard to tell people "yes", when they ask "do you need anything?". I know that will get easier, I guess after all the years taking care of my mom and my FIL, it's tough to think that someone has to take care of me. I'm with you though, wouldn't it be nice if someone just showed up at the door with a meal? Surely everyone close to my home knows I live at the ballfield.

I'm really not complaining though, it was pretty cool last night, after my 7yr old's baseball was over ( 6 hours in the hot sun, heat index of 103) , I took all 3 boys to the grocery! For the first time EVER, I sat at the front of the store and my 3 boys did the grocery shopping! I was so thrilled! Next I need to teach them how to put everything up when they bring it in the house! hahaha

Keep the faith,
brenda

 

[sral]

Sand,

It's interesting that upon a PLS diagnosis they ordered rilutek. My mom's neuro said they only prescribe rilutek for ALS.

Have you had symptoms for over three years?

 

[sand]

Hi sral,
I think it was only the drug my neuro knew to prescribe for me in hopes that it helps. I started with a herniated disc, surgery and I was still left with a weak left leg. All starting in 2003. My left arm and hand got weak in 2007. I just saw my primary doctor today in hopes that he would prescribe lithium and he went along with my neuro that he can't prescribe it without it being approved for ALS by the FDA. He said he was afraid of being sued. I am going to order it online.
Sand

 

[sand]

Hi Brenda,
I just got back from my primary doctor and he wouldn't prescribe lithium since it hasn't been approved for treating PLS or AlS by the FDA. I am going to order it online. Did your doctor order the carbonate or orotate form and how many mg.'s. He did do a blood test to check my neurontin level since I think some of my ailments are coming from taking that drug for so long. He did say he is going to discuss lithium and neurontin with my neuro. When did you start lithium? What do you mean by your speech is deliberate? Do you think ypu feel a little bit better? Do you have any bad side effects?
Sand

 

[MtPockets]

My 17 yr old just called, he is in Lexington, KY with my hubby at the Bluegrass Track and Field Games. He won his age division as well as the open division in pole vaulting! He jumped a new personal best of 13 ft 6 in! I was so tickled for him-this means he will have different coaches looking at him during his senior yr this year, and maybe college will be paid for!yippee!
Keep the faith,
brenda

I want to congratulate your son on doing so well in the pole vaulting. I use to do that when I was in high school over 45 years ago. I think it must have been 1963. The best I ever did was 12 foot 6 inches. We had Swedish Steel poles back then and landed in a pit full of saw dust.
I think I must have landed on my head way too many times. That is why I am abby-normal I guess. :-D:-D:-D

 

[Teri]

Still not sure what to do

Hi! I wrote on this forum last night for the first time, not sure that I did it right... My husband is a retired Marine since 2004. Shortly before retirerment he started having problems with hand writting. We had some test the called it writers cramp and started giving him Botoxin injections in the right arm. Since this time with that not helping, we have seen a couple of Neurologist. They first said that it seem to be PD.. We went with this DX. for the last few years.. But he seem to keep getting worse. We just had a new visit at a Neuo. office, and said that this is not PD, but feels it could be PLS or ALS. We have made appointment to be seen at a ALS Clinic.. He has now started to have sever Right shoulder Pain the goes down his arm.. He also has some Left shoulder Pain..

Their is more but that is most of it.. I'm looking for some answer as to what I maybe having to face.. He hurts all the time legs twitch and jerk. He is so tired all the time.. I'm really scared for him and the family..Thanks for letting me bend your ears..

Teri

 

[Teri]

Al

Al,

Thanks for writting back to me.. Yes it seem to had started off slow but the last few months things have really changed, the shoulder pain. His feet or toes that is are curling..
And his has trouble holding his fingers out straight..After awhile they start to hurt..They started him Provigural to help him stay awake during the day because, it just about cost him his job. He is so tired that he was falling asleep during the day.. I'm really worried..
I work in a CCU Unit at a hospital I'm and UnitClerk Cooordinator and also a Certified Medical Assistant and I have had one ALS PT. on the floor years ago.. It is heart breaking.. My husband will be 44 this Nov. But thanks so much again for answering..

Teri