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ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
8,348
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hello-
I had my first ALS clinic appointment yesterday. It was very overwhelming and made me cry, I won't lie. I have to admit though, it wasn't terribly informative about my personal progress, nor did they seem to be able to give me any idea of what to expect over the next little while. Only that they would see me in 4 months to assess again.
I seem to have confounded the physio about how to help me with my symptoms. My spasticity and cramping is increased by even the smallest movements or effort. The physio spoke to me about botox injections in some of the worst affected muscles. As I've only been spastic for 7 months, I would think that's a drastic first step, as I have, hopefully, many years ahead of me and botox's effectiveness wears off if used too much.
There were a few other things they spoke to me about with regards to where to get information, signing up with the ALS Association, lending closet, getting a pwc, etc.
What they did let me know in detail, however, was about drugs that are available.
So far, the previously prescribed baclofen will be reduced a bit (I'm taking the max dose and it is either no longer able to keep up with the spasticity, or I am desensitised to it). I have also been prescribed tizanidine, sertraline and lamotrigine- for spasticity and, it would seem, possible anxiety at night. The nurse also mentioned ativan or the like to actually help me sleep (physical discomfort is keeping me awake). This seems like a huge amount of drugs to dump in my system on a daily basis. I'm a clean eater and have always shied away from all drugs in the past. Is this type of drug load normal? It seems like overkill to me. My poor liver. And what about interactions between so many drugs all at once? I take quinine and vit D as well. So I will practically rattle as I stagger around after taking all of these.
What are others' experience with PLS and the drugs prescribed? Anything effective for you? Anything that is a waste of time?
 
I'm sorry to say that my experience may not be very helpful. I was prescribed Baclofen after my diagnosis with PLS. That took 11 years.

Most of my drugs preceded my neurological diagnosis but were in reaction to my symptoms. I taker gabepentin for pain, red yeast rice to lower my high cholesterol, and
Myerbetric for urinary incontinence.

I feel I need all of these but then, as I said, only one came after my daignosis
 
The sertraline generic for zoloft, will decrease anxiety and help you sleep. If you are less anxious you will breathe easier. If your zoloft is adjustedproperly, people will not be able to tell you take it. You, however, will feel much better.
 
I think somewhere, in someone's office at a pharmacutical company my picture hangs in tribute to contribution to the obscene wealth of the industry. I've tried to pare down the number of drugs several times only to have new symptoms pop up requiring another scrip. On the plus side, I've gotten to know my pharmacist really well. He's quite a nice guy.
Vincent
 
ShiftKicker, Baclofen and tinZANidine are the important ones (for me) to help relieve spasticity and cramping. Plus vitamins.... I take E and CoQ10. Muscle stretching is very important also. Hope this helps. TB
 
Sorry to hear about your situation. PLS progression varies widely. Some people are still using a walker after 20 years and some people are in a PWC after a few years. Botox worked in my calf muscles somewhat. It seemed to have minimal benefit in my thigh muscles. I stopped it because the benefit was not worth the cost. I have had PLS for 12 years and it started with my speech. I have been in a PWC for 6 years. I use baclofen and tinzanidine mainly at night for muscle cramping. I don't take anything for sleeping. I can always take a nap if I don't get a good nights sleep which doesn't happen often.
 
Billbell52,

Other than the Botox part, your PLS story sounds EXACTLY like mine, meds and everything! You're just a bit ahead of me on the timeline. Started with speech in 2008, full time PWC by 2014. Hate this! Tractor
 
I do not take any medications. I have chosen to live with the pain, the emotions and all the rest this b1tch has to offer.
 
Uh...Um...OK. Good luck with that!
 
It is a different iisue when you have PLS Pete. People with PLS can live normal lifespans.
 
I had been waking up with muscle cramps--not the severe cramps I would occasionally get at night from running, but PLS-induced cramps that would propel me out of bed and then recede after some stretching. A CVS pharmacist recommended homeopathic pills called CVS Leg Cramps. She said they really work, and in my case they did. No side effects.
 
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