Newly Diagnosed
- Status
earinod
New member
- Joined
- Jan 20, 2008
- Messages
- 2
- Reason
- PALS
- Diagnosis
- 08/2007
- Country
- US
- State
- CA
- City
- Sutter Creek
First Post Plus Drugs Rilutek & Gabapentin
I received my diagnosed of ALS at the end of Aug 07 after a friend of my 84-yr old mother who was diagnosed with Parkinson's (the friend, not Mom) listened to my symptoms and recommended that I see a neurologist. I was having excruciating 'charley horses' in my feet and calves for a year or more and had noticed a weakness in my right arm. By July I couldn't turn the ignition key in Mom's car that I had turned effortlessly in May.
I thought I had some kind of shoulder impingement and probably needed some mineral added to my diet for cramps, so the ALS diagnosed came as a total shock. I knew nothing about ALS so immediately began researching online.
My neurologist referred me to Dr. Robert Miller at the Forbes Norris ALS/MDA Research Clinic in San Francisco who confirmed the diagnosed. She also prescribed Gabapentin. When I take it several times a day, I am pretty much cramp free. Dr. Miller prescribed Rilutek. We were leaving Sept 1 for 10 days in Hawaii with family, but I got the pills and started taking them immediately. I was told that I could take both pills together on an empty stomach (2 hrs after and one hr before food) and have had no problems taking either drug. Reports vary on the advantages of taking Rilutek but Dr. Miller said life extension ranges from 9-21 months. I am hoping that starting it early results in extending these months when the effects of ALS are not so devastating. Time will tell. I fell on Dec 1 and fractured my right wrist so a slight curve of my little finger but still being able to type is now all fingers curved and an unusable hand. PT started last week and I hope to get some use back, but meanwhile I hunt and peck with my left.
I have and know that I will have many questions of PALS further along, but have two for now:
1. Someone mentioned a brace to wear at night that keeps the fingers from curling -- where can I find one?
2. I feel my husband is in denial while I am trying to do whatever is possible to minimize the effect on me and those close to me. For example, for many years I've been told that I have cataracts. Before the diagnosed I'd agreed to postpone it for another year. After talking with friends who say they wish they'd done it sooner, I now have an appointment with a surgeon. I've also started a remodeling project on a little rental house we own that is close to my daughter who will be my primary caretaker. To make it more wheelchair accessible, I'm replacing carpet with hardwood and tile floors, using what I have saved for my 'advanced age'. I realize ALS progresses differently from one person to another, but from my perspective it is moving fast. I already have braces for both feet and am starting to learn to use them, although I usually fall backward and from a squatting position, except for the forward fall that fractured my wrist. So my question is about timing. From what I've been reading, it appears I am likely to be in a wheelchair in 2-3 years. True?
I have excellent insurance now but will be 65 in July and am concerned about losing these benefits in a few months.
Sorry, I first started this in response to a comment about Rilutek and have now gone on endlessly, but would appreciate suggestions from anyone who has read this far! ;~)
Doni
I received my diagnosed of ALS at the end of Aug 07 after a friend of my 84-yr old mother who was diagnosed with Parkinson's (the friend, not Mom) listened to my symptoms and recommended that I see a neurologist. I was having excruciating 'charley horses' in my feet and calves for a year or more and had noticed a weakness in my right arm. By July I couldn't turn the ignition key in Mom's car that I had turned effortlessly in May.
I thought I had some kind of shoulder impingement and probably needed some mineral added to my diet for cramps, so the ALS diagnosed came as a total shock. I knew nothing about ALS so immediately began researching online.
My neurologist referred me to Dr. Robert Miller at the Forbes Norris ALS/MDA Research Clinic in San Francisco who confirmed the diagnosed. She also prescribed Gabapentin. When I take it several times a day, I am pretty much cramp free. Dr. Miller prescribed Rilutek. We were leaving Sept 1 for 10 days in Hawaii with family, but I got the pills and started taking them immediately. I was told that I could take both pills together on an empty stomach (2 hrs after and one hr before food) and have had no problems taking either drug. Reports vary on the advantages of taking Rilutek but Dr. Miller said life extension ranges from 9-21 months. I am hoping that starting it early results in extending these months when the effects of ALS are not so devastating. Time will tell. I fell on Dec 1 and fractured my right wrist so a slight curve of my little finger but still being able to type is now all fingers curved and an unusable hand. PT started last week and I hope to get some use back, but meanwhile I hunt and peck with my left.
I have and know that I will have many questions of PALS further along, but have two for now:
1. Someone mentioned a brace to wear at night that keeps the fingers from curling -- where can I find one?
2. I feel my husband is in denial while I am trying to do whatever is possible to minimize the effect on me and those close to me. For example, for many years I've been told that I have cataracts. Before the diagnosed I'd agreed to postpone it for another year. After talking with friends who say they wish they'd done it sooner, I now have an appointment with a surgeon. I've also started a remodeling project on a little rental house we own that is close to my daughter who will be my primary caretaker. To make it more wheelchair accessible, I'm replacing carpet with hardwood and tile floors, using what I have saved for my 'advanced age'. I realize ALS progresses differently from one person to another, but from my perspective it is moving fast. I already have braces for both feet and am starting to learn to use them, although I usually fall backward and from a squatting position, except for the forward fall that fractured my wrist. So my question is about timing. From what I've been reading, it appears I am likely to be in a wheelchair in 2-3 years. True?
I have excellent insurance now but will be 65 in July and am concerned about losing these benefits in a few months.
Sorry, I first started this in response to a comment about Rilutek and have now gone on endlessly, but would appreciate suggestions from anyone who has read this far! ;~)
Doni
ilgal
Active member
- Joined
- Jul 28, 2007
- Messages
- 83
- Reason
- PALS
- Diagnosis
- 00/2001
- Country
- US
- State
- IL
- City
- Somewhere
I have a hand brace that I wear at night to keep my fingers in a "resting position" (not curled under). The neurogolist wrote a prescription for it and I got it at an orthotics place. They measured my hand and wrist then ordered it. It is hard plastic with cushioning and is held on by 5 velcro straps. My health insurance paid for it.
Sorry I don't know what to answer to your other question. To me it sounds like you are progressing quickly since you already have braces, etc. I don't mean to be insensitive, just honest. How is your respiration? That and not getting nutrition seem to be what ultimately defeats PALS. Maybe your problems will remain in your limbs for a long time and not affect your breathing.
Sometimes I think my husband is in denial too. He says, "We're going to beat this," and puts off (no talk, no action) practical things I try to bring up like converting a room on the first floor of our house to a bedroom so we'll be ready for when I can't climb stairs. I guess we all move through the stages of grief in our own ways and at our own pace.
Sorry I don't know what to answer to your other question. To me it sounds like you are progressing quickly since you already have braces, etc. I don't mean to be insensitive, just honest. How is your respiration? That and not getting nutrition seem to be what ultimately defeats PALS. Maybe your problems will remain in your limbs for a long time and not affect your breathing.
Sometimes I think my husband is in denial too. He says, "We're going to beat this," and puts off (no talk, no action) practical things I try to bring up like converting a room on the first floor of our house to a bedroom so we'll be ready for when I can't climb stairs. I guess we all move through the stages of grief in our own ways and at our own pace.
ilgal
Active member
- Joined
- Jul 28, 2007
- Messages
- 83
- Reason
- PALS
- Diagnosis
- 00/2001
- Country
- US
- State
- IL
- City
- Somewhere
Doni,
I forgot to comment about your taking gabapentin. That is neurontin. There have been several posts hear suggesting bad things about neurontin and ALS. I myself don't know but thought you might want to search back and read them.
Wishing you the best.
I forgot to comment about your taking gabapentin. That is neurontin. There have been several posts hear suggesting bad things about neurontin and ALS. I myself don't know but thought you might want to search back and read them.
Wishing you the best.
CindyM
Moderator emeritus
- Joined
- Sep 17, 2006
- Messages
- 3,556
- Reason
- Learn about ALS
- Country
- US
- State
- New England
- City
- Anytown
Hello Doni and welcome to the forum. Sorry to hear about your DX. We will help in any way possible; you've already started the ball rolling with some great questions. I am sure our PALS and CALS will be offering lots of tips soon. Cordially, Cindy
sharonca
Distinguished member
- Joined
- Nov 27, 2007
- Messages
- 428
- Reason
- PALS
- Diagnosis
- 12/2007
- Country
- US
- State
- CA
- City
- Mentone
Hi Doni! The thing I hear about being prepared is to get your house ready, and purchase assistive devices before you need them. So you are comfortable using them before it becomes difficult. Friends have been bringing me things I don't need now but I just put them in the garage until I do. Like a shower chair and a toilet chair - PVC contraption with big rotating wheels. The things that get me excited these days! And I spend hours researching various forums and sites to see what the possibilities are. I went to my first support group last week also. Very helpful. My husband has turned into this really helpful, concerned partner. Who knew! Knowledge is power. Hope you are having a good day. Sharonca
alssister
Have you been to an ALS Clinic? If not, you need to get with one so they can evaluate your needs. You'll want to get a PEG before your swallowing really gets you to where you become malnourished. What are your other symptoms?
Sorry for the diagnosed of ALS and welcome to the forum.
Have you been to an ALS Clinic? If not, you need to get with one so they can evaluate your needs. You'll want to get a PEG before your swallowing really gets you to where you become malnourished. What are your other symptoms?
Sorry for the diagnosed of ALS and welcome to the forum.
earinod
New member
- Joined
- Jan 20, 2008
- Messages
- 2
- Reason
- PALS
- Diagnosis
- 08/2007
- Country
- US
- State
- CA
- City
- Sutter Creek
Thanks for the additional info on the hand brace, ilgal. I have an appt at the ALS/MDA clinic on 2/1 so will ask about one and also for their recommendation on voice recognition software. I've been taking a class on writing memoirs through our local senior citizens org and fracturing my wrist and having to hunt and peck with my left hand has really ended my ability to write more than a few paragraphs and even typing a message like this takes 1/2 hour or more.
I made a mistake in my first post about the additional time as a result of taking Rilutek. Dr. Miller said 90 days to 21 months, not 9 to 21 months. I think I may be the earliest he has ever diagnosed. In Aug my respiration was 129% and had barely dropped to 120% 3 months later, so I am starting in excellent shape thanks to years of jogging in my 30's, I suspect. I have developed a sort of 'hiccup' when I swallow but am having no problems with food yet. When diagnosed I'd been trying to drop a few pounds but they said to keep my weight up, so have been spoiling myself and gained back 3 of the 6 pounds I had lost.
I appreciate the suggestion about researching the archives about gabapentin (neurontin). Long term it seems quinine is the 'drug of choice' for quite a few.
I'm gaining a world of information from all of you and this forum. The suggestion of cutting an opening in the side of an inexpensine laundry basket to take pressure off feet and retain warmth is great and being able to ask questions and hear how others handle the various issues is priceless. The first time I looked for information I found information for building a desk from someone who had ALS (Diane?) but haven't been able to find it again. Does anyone know where I saw it? It wasn't on her website. Thanks again. I guess I should have started a new thread when I first posted rather than go so far astray from the initial post. Have also discovered how to search the archives -- my thanks to all who have been on here who can refer me to prior discussions as I come to gripswith this.
I made a mistake in my first post about the additional time as a result of taking Rilutek. Dr. Miller said 90 days to 21 months, not 9 to 21 months. I think I may be the earliest he has ever diagnosed. In Aug my respiration was 129% and had barely dropped to 120% 3 months later, so I am starting in excellent shape thanks to years of jogging in my 30's, I suspect. I have developed a sort of 'hiccup' when I swallow but am having no problems with food yet. When diagnosed I'd been trying to drop a few pounds but they said to keep my weight up, so have been spoiling myself and gained back 3 of the 6 pounds I had lost.
I appreciate the suggestion about researching the archives about gabapentin (neurontin). Long term it seems quinine is the 'drug of choice' for quite a few.
I'm gaining a world of information from all of you and this forum. The suggestion of cutting an opening in the side of an inexpensine laundry basket to take pressure off feet and retain warmth is great and being able to ask questions and hear how others handle the various issues is priceless. The first time I looked for information I found information for building a desk from someone who had ALS (Diane?) but haven't been able to find it again. Does anyone know where I saw it? It wasn't on her website. Thanks again. I guess I should have started a new thread when I first posted rather than go so far astray from the initial post. Have also discovered how to search the archives -- my thanks to all who have been on here who can refer me to prior discussions as I come to gripswith this.
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