Just diagnosed

[Geo]

Sand ,Its normal to be bitter , i was and still get those nasty bitter feelings from time to time .Maybe time to get a new Doc. Did he talk to you about taking these Meds and discuss the side affects ? A little communication goes a long way , Some only know how to Dole out drugs . Look at this way You get to live and breath and even sometimes thats hard . But dont give up and never depend on one Doc. to give you all the answers , especially PLS answers . Geo

 

[MtPockets]

I was on Riluetek for several years. My Neurologist explained to me that it would help my diaphragm not lose function as fast. However she also said that it could only prolong my life by maybe 2 to 3 months by using Riluetek. It cost me $1300 a month for that drug, so I stopped using it.

From drugs.com I find this comment:
"Prolonging survival or prolonging the time before a patient with amyotrophic lateral sclerosis (ALS, Lou Gehrig disease) is placed on a ventilator or breathing machine."

It sounds like what my Doctor told me was accurate.

It took some time and a lot of prayer for me to get over the angry attitude after being Dx May 11, 2006 with ALS. At first for probably several weeks I was numb and found it hard to realize this could be true. Eventually, because of my faith in God, I was able to move into a better frame of mind. I do not know what I would have done without Him.

 

[sral]

Captain Al, I hear you!

I've gotten through many dark and gloomy days with God's Help!

May God bless you!

 

[sral]

Captain Al,

One more thing ... did you notice any difference/change when you stopped Rilutek?

 

[Jennifer51]

Sand I sure dont know how and why you are on Rilutek . Originally they Put ALSers on it when they knew they didnt have much time left .Did your doc. Make you aware of what it does ?This certainly a new one for me .If you look it up you can see . Geo

I am a bit confused by your comment ..originally giving rulitek to people who did not have much time left...... Maybe that is what they did when they did original trials.

I was diagnosed March/April 08, and was told that they had diagnosed me early...first symptoms I was aware of were in Jan/Feb 08 (slurred speach).
Anyway, one of the 2 neuros I saw, supposed to be one of the top men in London, told me that IF it works for you, then they expect it to give you up to 20% longer. so they gave me up to 3 years, then that would maybe give me an additional 6 + months. He pointed out that if you take it when you have had als much longer and you are nearer the other end, then 20% of not much, is much less and not really worth any side effects. I am still mobile and can pretty much function normally apart from slurred speach, drinking only with a straw and now finding it difficult to walk too far outdoors and stairs and now becoming a bit of a problem. I noticed an improvement in the dreadfull twitches within hours of taking the first pill, and my swallowing improved slightly...so at the moment it is ok for me...just wish it would do EVEN more....Jennifer51

 

[olly]

sand

i am puzzled,you said you dont have spasms.
spasms are the main pls symptom.
do you have hyeractive reflexs?
clonus? stiffness? balance problems?
all these are umn and would be present in pls.
bulbar involvement is when all these symptoms start to effect your jaw,tongue,swallowing etc. making it harder to speak and eat.
look forward to your reply on this.
take good care.
caroline

 

[brendapals]

Captain Al,

OK, I've now been on Rilutek ( with Lithium also ) for 14 days. I'm pretty sure I read that I shouldn't even realize that I'm taking it- if I don't have side effects.

Well, my speech patho discharged me last Friday, said my swallow was stronger and I didn't need any more e-stim. I don't think that was Rilutek- I think God was answering some of my prayers!

My insurance covered all but $30 on the Rilutek, so I guess I wonder if it's worth the extra 2 or 3 months?

Thanx for everything,
brenda

 

[MtPockets]

Rilutek cost vs benefit?

Jennifer51, I was told when diagnosed, May 2006, that I had 3 to 5 years and the Rilutek would give me, maybe 3 months. That just isn't worth the price for me. I had no insurance to cover the meds and with the cost of gas, food, etc. I do good to put food on the table for me and my wife.

When I stopped taking the Rilutek, I did not notice any difference, and had no difference when taking it either. If you can afford it, I do not see any reason not to take it. Unless you have side effects or something. Just too expensive for me.

 

[Whitsend]

Whitesand,

Your symptoms started in 2003 and now 5 years later you're still able to walk and have function of your right side. I'm glad the progression has been slower for you.

By the way, what's a rollator cane?

SRAL,

A rollator is a walker with 4 wheels and hand brakes.

 

[sand]

Hi,

Today I discovered that there is a page 2. I will get used to this site soon!
I have stiffness in my leg and knee joint and mild spasms when trying to stand after getting out of bed. Had all sorts of tests including lots of EMG's and MRI's because I drag my left leg and it gets real tired. I can not walk outside on uneven surfaces, especially grass. I can't even walk the short distance to my mail box on my inclined driveway. I have balance problems and when I have to get down on the floor to get something it is VERY hard to get back up. My back hurts when walking with a cane so I gave in and bought a rollator walker today and I love it. I couldn't carry anything in my weak left hand and walk with the cane in my right. NO bulbar symptoms yet and all weakness is on the left.
Sand

 

[sand]

Brenda,
How much Litium are you taking?
Sand

 

[sand]

Whitsend,
Just read some things about you and your case seems so similiar to mind except my right side does not seem to be affected yet. Not looking forward to that though. I bought a rollator walker today. My cane was just making me to tired to get around the house and I couldn't carry anything and now I have a basket. Typing with one hand is a pain in the ---.
Sand

 

[Whitsend]

Whitsend,
Just read some things about you and your case seems so similiar to mind except my right side does not seem to be affected yet. Not looking forward to that though. I bought a rollator walker today. My cane was just making me to tired to get around the house and I couldn't carry anything and now I have a basket. Typing with one hand is a pain in the ---.
Sand

Sand, Yes your progress sounds almost identical to mine. I had to give up the cane just about a year ago. I was falling just too much and it was effecting my posture to the point of having severe back aches. Unfortunately now, I find that my arms tire and get sore from holding up my weight. While there is no cure, I sure do wish they had better drugs/methods/whatever to at least control the symptoms.

 

[sand]

Hi Geo,
Wow you are in FL and that is where my husband is working right now ( near Tampa ). I am very bitter, I wish I could be there with him on weekends, but it is too hard for me to travel and I am still seeing doctors and I will be checking out all my meds on Monday, especially Rilutek that the neuro put me on in May. I don't think doctors communicate at all with each other and read the meds list that they ask for at every visit. I also just discovered that the hydrocodone the neuro put me on can interact with Neurontin.
Must go and feed my cat.
Hope you had a great day.
Sand

 

[olly]

sand

mine started in both my legs first and over the years it has worked up my body now finally bulbar,hopefully nowhere else for it to go.
uneven surfaces are bad as well as stairs.
hope you get your meds sorted out,if the spasms get too bad try baclofen it is the most commen drug/muscle relaxer used by pls'ers.
take good care
caroline:-D