Status
Not open for further replies.

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, all ... I was diagnosed with ALS on 5/5 of this year, with bulbar onset. Symptoms started in March, 2006. I've been referred to the UCLA neuromuscular center, but am getting a perpetual runaround trying to make an appoint. (Since early May, it's been "call back Monday, call back Thursday, call back Monday, etc.) They can't find my paperwork, or it's "being reviewed"; next time I call, it's been lost again, then next time is being reviewed again, etc.

This is my problem (aside from ALS): Even when I'm finally "allowed" to make an appointment, I understand it will be October or November before I can even GET an appointment to actually see a neurologist.

I was diagnosed at UC Irvine, which is too far for me to drive on a regular basis for care. Hence the referral to UCLA.

My speech is almost gone now ... it has deteriorated very rapidly lately. Choking, swallowing remain poor but holding steady. (knock wood) After losing 25 pounds the first 2 years, I've managed to gain 4 since the diagnosed. Had an episode of shortness of breath recently ... lasted several days ... which went away, but I know it won't stay away.

Am also starting to have twitches in my left bicep and forearm, and a strange curling in of two fingers on both my left and right hands, which I assume are contractions. So far, I can gently straighten out my fingers when they curl in, and then the curling stops, but I assume this is a sign it's spreading.

By the time I actually get into the neuro program, I am afraid it will be too late for Rilutek to do me any good. I'd like to start it now, and from reading this forum, I've learned that sometimes people turn to their primary care physicians for things like lithium.

I want to ask my PCP to prescribe Rilutek. Are there any contraindications? I've heard bulbar onset life expectancy is 18 months, but obviously that's wrong in many cases ... I'm in month 27 and still alive and kicking ... but I don't think I have a spare 6 months to loll around while waiting for treatment. I'm 72, and know I have to die sometime (probably soon), but a couple extra months would be great!

Sorry this is so long. I can't seem to write a short message. Any feedback is appreciated!
Beth
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Have you tried to get into Cedars in LA - they have a new ALS clinic there. I've heard it is really good. I go to UCLA and was frustrated at first. I think as I progress I will switch to Loma Linda University Medical Center since it is closer to home.

Before diagnosis I called UCLA everyday trying to get a closer appt. They only see people at the clinic on Thursdays so it fills up quick.

Hope this helps.

Sharonca
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
I have bulbar onset 9 years My neuro said Bulbar patient aspierate more causing pnuemonia leading to early death Be careful when you eat, eat slowly and small amounts to be safe.


Pat
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Beth. Sorry you're getting the runaround. Your GP should be able to write the script for Rilutek. I am sure he knows of the diagnosis. The biggest complaint I've heard about the drug is stomach discomfort and diaharrea. It can cause liver problems so blood tests are needed. I take it right now because I feel the benefits outweigh the side effects. Others don't. If you go to www.drugs.com and type Rilutek in the search you can read about it.
AL.
 

Bobby C

Active member
Joined
Dec 31, 2007
Messages
40
Reason
PALS
Diagnosis
12/2007
Country
US
State
Texas
City
Austin
Beth, I tried Rilutek prescribed by ALS director, but also taken with massive doses of ViT E, Melatonin and Co-enzyme Q-10. I had dirrhea big time. So I stopped everything for a while, then did Dannon Activia for two weeks. I then added 400 iu Vit E/day , for two weeks. Then I added Rilutek, 2 50mg/day. After three weeks I added Co-enzyme Q-10, 100mg/day. Now my bowel movements are normal, no apparent side effects. Liver tests all nornal. I did not add back Melatonin, because when I tried, I got dirrhea from it. I take Rilutek as prescribed, either l hour before food, or two hours after. I always take Vit E and Co-enzyme Q-10 with food. I did lose 15 pounds, and regardless of what I eat, I do not gain anything back. Good luck.
 

andyvaughn

Distinguished member
Joined
Feb 12, 2008
Messages
138
Reason
CALS
Country
US
State
ca
City
thousand oaks
Beth.. we go to the Cedars ALS clinic, or, my husband does, I take him.. so I guess it is "we".. Dr. "Abi" (her real last name is Muthukumaran) is wonderful, as is Hope, the RN at the clinic. In fact, most of the therapists that work at UCLA work at Cedars too. The ALS clinic runs only on Wednesdays at Cedars, we had no problem getting in at all. Dr. Abi is wonderful. We saw Dr. Graves at UCLA for a second opinion, and it was quite difficult getting in, as you are experiencing.
As far as rilutek, your GP should prescribe it, IF he/she has access to your records to confirm you have ALS? There is some risk to the drug, albeit minimal, (elevated liver function reported in some patients) but your GP should be fine with it, I wouldn't think it would be a liability for them.
I wish you well...
Andrea, wife of Pals Jim
 

JohnMc

Active member
Joined
Apr 12, 2008
Messages
50
Reason
PALS
Diagnosis
10/2008
Country
US
State
AZ
City
Phoenix
Beth- I wish you the best. ALS is an extremely frustrating disease, but the sort of doctor nonsense you are having is really crazy!

My neuro prescribed Rilutek a couple of weeks ago, and I have not officially been diagnosed yet. So far, I have not really had any side-effects (although I seem to feel a bit more fatigued). There is only one Rx for this disease, and it seems nutty that they would diagnose without prescribing it!

Be certain that the Dr that prescribes follows up with the tests for liver damage, though.

Hope it works out for you,
John
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Thank you all for the very helpful responses. Pat ... 9 years! That gives me the courage to go on! Also the suggestions about Cedars are good ... I'm going to give UCLA one more shot Friday, and if I can't get in soon, then see if I can get into Cedars to get the process started.

If I can't get into Cedars soon, either, I'll go to my primary care doctor for the Rilutek. She will know to watch out for side effects, I hope (or I'll remind her!)

This is a terrific forum, and boy, does it help have people to talk to who know what they're talking about!
Thanks again.
Beth
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Beth - when I'm calling UCLA I put it on speed dial and just keep hitting the redial. They have to answer sooner or later. Just be relentless.

In case you want to make a drive - Loma Linda University Medical Center ALS clinic is much easier to get in to. Dr. Nist is in charge - great doctor. And she prescribes Rilutek and Lithium.

Sharonca
 
Status
Not open for further replies.
Top