Newly Diagnosed

[sharonca]

Hi- this is my first post. I was dx yesterday at UCLA by Dr. Michael Graves. I was hoping for something short of "ALS". I was hoping that he would say "watch and wait". He said ALS. I first starting losing my balance and occasionally falling around May 2006. I fell and broke my ankle big time in July 2006. In July 2007 when I still just didn't feel right and was still losing my balance I went to my family physician. He said I was fine - couldn't tell that I was walking "funny". In August he sent me to a neurologist who did the usual MRIs, brain scan, pelvic scan and multiple blood tests. When he couldn't figure it out he sent me to UCLA for a muscle biopsy and EMG. They only did the EMG and more blood work to rule out auto immune issues. It is mostly in my ankles and legs. Although I have the muscle twitching all over. I get fitted for AFO's on Monday and got my Rx for rilutek (sp). I'm certain it has not even begun to sink in. Thanks for being there. I'm sure that I'll rely on these forums heavily. I have poured over them for the last month hoping that I really didn't need to do more than read.

[CindyM]

Hello Sharon- I am so sorry about your DX. I am at a loss for words, as usual for me when a member announces a DX. This disease stinks, and I am sorry it has hit you now, too. regards, Cindy

[AngelManFL]

Hi Sharon, I'm very sorry to hear about your diagnosis - you will find many answers to many questions here, this forum is my second home and I hope and pray for you and your family that you will find comfort in knowing you won't have to face this alone. There are many experienced and knowledgable people here whom will be able to help you in anyway that you need whether it is answers to questions or just listening and able to give some comfort when needed.

May God bless you and your family - He is always by your side...

[Icanmanz]

Hi sharon. Sorry to hear about your dx. May God help you through this journey. Will be praying for you. God bless!

Irma

[cherie]

Hi Sharon sorry to hear about dx I cant imagine hearing that for myself..My spouse and I were told dec 19th of this year about his ILLNESS after months of testing for other illnesses such as tumors,and strokes and myastena(sp) its just been a long haul,My spouse is 40 yrs he is an artist and he hasnt accepted this very much at all he is in denial like I have never seen before:confused: I guess its something he isnt ready to hear I mean who is really..His family came here asking questions and he told them he wasnt sick!! He said he hoped it was a virus and he would get better..I explained to them and him what the Dr has been telling us all along,My spouse keeps talking about our future plan in which I dont see happening becuase he wont be able to work with his arms at some point..It is so sad for me to watch him change on a daily basis,his walking is slower and slower and his voice is changing..I am at a loss here of what to do..I only want to do whats best for him,and see him through this the best I can,right now I am working on putting together a support team for myself and him when he is ready to..I told him that I come onto this site on a daily basis I think it is helping him to hear about other stories I have read about on here...

[Al]

Hi Cherie. There is an ALS Chapter in Victoria. The contact person there is John Braun. He is a great guy and I am sure he could give you good sound advice. I met him here in Toronto a few years ago at a symposium and was impresssed with what a genuine nice guy he is. You can get his number at www.als.ca and then look under contact us and BC. I hope this helps.
AL.

[Icanmanz]

Cherie, hi! Just read your post, and I am truly sorry for you and your husband. May God help your husband accept this terrible illness. Right now he is in both denial and shock, bless his heart. I know the feeling of helplessness, knowing that there is nothing we can do. May God bless you folks. It just hasn't sunk in yet. Take care of yourself, and your husband as well, dear!

Irma

[Vicki S]

Hi, I started falling around Mardi Gras 07. It seems like I spent a lot of time on the floor.


My family doctor sent me to a rhuemtologist who was a pill pusher. The prednisone ran my blood sugar to the 300's but it did get rid of the pain I have in my calfs when I wake up in the morning. He sent me to a neurologist. He did the emg and Mris on my neck and back. Then he sent to a specialist in Birmingham and he did another emg and said it was ALS. By the time I went to Birmingham I was in a wheel chair because my husband was afraid I was going to break a bone. The ALS is in my toes and ankles. I now have braces on both legs and I walk with a walker. I don't any balance. I don't fall forward it's always backwards. I'm afraid I'll have to go back to the wheelchair because I've fallen at least 8 times with the walker. I really have a hard head. I fell from standing position backwards on a concrete parking lot. People inside heard me hit. I went to the emergency room and had cat scan. No blood vessels were broken, no pooling blood and no fractures. All I had was a bruise on the back of my head. I'm on relatek and my symptions haven't progressed. I'm 61 and a Decorative Artist. I can still paint and read. I have friends that take me out to lunch and the movies. I'm also still invited to the Mardi Gras balls.

Vicki S

[keith]

I too tend to fall backwards now more than forward. One of my greatest concerns is falling in a parking lot and not being able to get up. A while back as I was trying to get into Wal-mart from the parking lot, and having a rather tough go at it, the greeter must of noticed me struggling and met me in the lot with a scooter, I could of kissed him ,though that might have drew some attention!

[cherie]

Thank you all for the information it is very useful to us right now,my spouse is slowly realizing whats happen to him,we looked at his legs this morning and the right side is shrinking really fast,I didnt measure them yet to see the difference but you can see it..We have an appointment tommorw they want to do somekinda test on his throat,and and then we have an eeg set up for the 28th of jan..I know this is too early to be tired but I feel tired already...

[Lorie]

Vicki, I can't PM you. So here goes. I have been through the Neuros and Specialist like Tim, my brother has done. He had symptoms for 7 years before dx. ALS.

You said you have pain in your calves?? Like Spasams??? I have the same. I have constant twitching in my ankles and dents below where they started in March 06. I have Muscle Twitching and Cramps all over. Where ever they want to be. But there consistent around my ankles. My feet have gave away a few times in the last months. The last time, I fractured the tiny bones in my right foot because my body weight all went in to my foot when my ankle went out suddenly.

They tell me no ALS. My concern is that I have had the same as Tim did for 7 years. Before DX. I don't concentrate on it. I just keep my Doc. updated.

I am curious!!!

Lorie

[sharonca]

Hi All.. I too fall alot but mostly forward. I can't seem to get up the slightest stair. Do alot of walking around! I was given an Rx for Ruletek(sp) before Christmas but didn't start taking it due to holidays and traveling. I was afraid I would get some of the side affects. Has anyone has problems taking it? I will be home in a few days and will begin then. I notice Vicki S said that her symptoms have not progressed. Mine have progressed just in the last three weeks. Scary. I have beent told to type less and not to exercise. Since I am so new to this I just don't know what to do. Quit working - for my husband's office, file for SSDI, what to do even though everyone says nothing makes it better. At least I'm sleeping these days since the Dx. Nothing to wonder about there. Thanks for all the input.

Sharonca

[liz]

And I fall sideways (to the right) because my progression is lopsided. Once I'm down, I can't get up without assistance. Made a big scene in KMart the other day - finally got picked up by a gigantic teenage boy who happened by. He was great - just scooped me up, set me on my feet, and went on his merry way.

[CindyM]

:-D Some people will do anything to get swept up by a young man! :-D

[sharonca]

I'm only on the first week taking the Rilutek and I'm having (last night and all day today) weird muscle pains. All night had trouble sleeping with the pains in my "back side" and legs and then today adding my left arm. Does anyone else have this? I tend to have the rarer side effects on any drug I take. I really want to be able to take this. I appreciate any response.

SharonCA

[Steve100]

Hi

I wouldn't worry TOO much if you can't take rilutek, a lot of people don't take them.

[liz]

I thought stomach distress and liver dysfunction were the side effects to watch out for with Rilutek.

[earinod]

I received my dx 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 dx 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 dx. 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 dx 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]

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.

[ilgal]

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.

[CindyM]

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]

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]

hi i was dx in 06 just started to have weeknes in my neens and muscle cramping in both of my legs in startin to get hard to swallow food what should i do

[jimercat]

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 dx of ALS and welcome to the forum.

[earinod]

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.