Recent content by BLPhill

I am part of the group who was on here in 2008. I’ve had motor neuron disease for over 13 years now. Betty

I have completed two rounds of infusions with no side effects. I had a port put in during my first round of infusions. I dont plan to stop the radicava at all, ever. One will never know if it really slows progression rate if you stop. Betty

Seattle MDA is terrible! They come in exam room after dr has left and ask if u need any equipment then say they will call and never do. This happens every three month when I go in. Ive told my neuro to save me the frustration and keep them out of my room. I deal with alsa only. I doesn't...

I joined the forum about the same time tom did. All of us who joined in 2008 are m just about gone now. Im so very sorry about your dads passing. Betty

You have to have the baclofen pump trial before medtronic would agree to put one in, this is how they tell wether or not the pump would help you or not, its a requirement. No DR or neurologist can say yay or nay to any motor neuron disease by looking at a mri.

I agree with hjlindley, even though I take 100 mg a day of baclofen its the tizanidine that will help the charley horses in your father. I get them all the time and its only the tizanidine that helps. Ask his dr to write script for zanaflex, that's generic name is tizinadine. I'm quite sure this...

,hi Mike I have been chasing the same question for 7 years and as of yet I have no answer. You will beat your head against the wall out of frustration.there is no answer to that question. I seen two als specialists one says upper motor neuron predominate als and the other says plas. One said...

I take 100 MG a day of baclofen. I have severe spasticity. But my spasticity changes from day to day. Weather in both extremes seems to make it much worse. If I don't take it my spasticity really kicks into high gear. Baclofen among other things have been very helpful to me. I don't ever...

I have had 3 emg/ncv so far, I wouldn't worry about pain of it. It's uncomfortable but not to bad. Welcome to the forum ladyannabel. I to wish you a non als outcome.

I think it's the "PERFECT STORM" of a number different things coming together.

Happy Birthday Kathy.

Hi Cris You may want to go over to the patientslikeme website to see what everyone else is taking.

Hi Hawroe Do you get the Tacoma news tribune. In todays sunday edition there is a great article for you and your husband to read about a scientist who also has als. Its a good read, should cheer you both up.

Happy birthday Kimberly.

It's ok to cry Ryan. Soon you will fit into your new normal. First few months are always the hardest but it will get better. I'm celebrating my 6 year anniversery date with motor neuron disease this October 1st. Many with this disease go on to live more then ten years and sadly there are many...