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batboy4111

New member
Joined
Oct 28, 2011
Messages
2
Reason
PALS
Diagnosis
12/2011
Country
US
State
CA
City
Harbor City
I just wanted to introduce myself & wasn't sure where to start.

I am 42 yo wife & mom of 1 son that is a Freshman in college. We live in Southern California just outside of Los Angeles. I was officially diagnosed (FINALLY!) last December up at UCLA by the ever warm (HA HA HA) Dr. Graves. After being treated like a lab rat & a number by he & his staff we have since switched over to Dr. Mozaffar at UC Irvine. He is AMAZING & my husband & son love him as well.

I first starting having noticeable issues with atrophy & dexterity in my right shoulder/hand approximately 6 years ago but was also diagnosed w. restless leg syndrome, leg cramps, migraines & fibromyalgia over 10 yrs ago. All of the neurologists that I've seen within the last year agree that all of the symptoms actually point to the initial very slow progression of ALS. So 10 yrs, 4 neurologists, 2 rhumatologists, 1 audiologist, 2 orthopedic surgeons, 2 unneeded surgeries, pages among hundreds of pages of test results, & 1 amazing shrink - I have a diagnosis & I am truly grateful that is slow. Now what? All I know is I joined this site back in Jan & today is my 1st attempt at reaching out to those outside of my personal circle of friends & family.

With that said, they say I have slow progression but I'm wondering if that can change? I ask because this time last year I was still driving, walking on my own, cooking, swimming, working FT, dressing, etc... Now my balance sucks even more, I use a walker fulltime, I can't lift my arms above my waist & they both feel like lead weights, my jaw/neck are always sore, I need help eating at times, drying off after a shower, & I can't do any of the above activities on my own anymore or at all. And I just started on a bipap at night which, according to the dr., is more of a precautionary measure. My laying down FVC is 73%, sitting up 86%.

Honestly I am not complaining, I know that I'm fortunate & that there are fellow PALS that are in much worse shape than I. I'm just wondering if anyone else has had the same pattern.

Thanks for letting me spew & I look forward to meeting all of you.
 

prattstar

Active member
Joined
Sep 19, 2012
Messages
50
Reason
PALS
Diagnosis
09/2012
Country
UK
State
South Yorkshire
City
Barnsley UK
Bat boy

Welcome to the forum. I am sure some of the more seasoned around here can and will answer your questions.

I wanted to say hi because I am 43, I was 42 a couple of weeks back, I have a young child and also have seen diagnosed with a slow progressing form of MND.

It seems you are a little further on than I am, I have been having cramps/fasics for 1-2 years but no weakness at this stage. All my clinical are good, it is my emg that supports my diagnosis.

I know the lab rat feeling. At least now that I have a diagnosis, I am off the mouse treadmill.

I wish you well, and am sure some of the others around here will address some of your specific questions.

Warm regards and a warm welcome

Ian
 

senior60

Active member
Joined
Dec 4, 2010
Messages
42
Reason
PALS
Diagnosis
03/2011
Country
ca
State
ontario
City
richmond hill
I have slow progression which started 3 yrs ago and has only effected my arms and hands.Loss of 80% stregnth.Generally speaking after 10 yrs with slow progression,limb onset your state now seems reasonable.As for your last year it seems to fast,more likely your symptons are just more pronounced.In my case the neuro has said progression will not speed up and the symptons may not appear outside my arms in some rare cases.I noticed your diagnosed date this year.What is the onset date?drug trials only accept 2-3 yr onset.
Going forward i would advise you to researh all you can and you may get a better understang of your progression and hopefully no surprises.Becouse of my research over the last few yrs i am confident as a 61 yr old male i will not die of this disease but will live my retirement yrs with a slow progressing dissability.I concentrate on percentages meaning taking ritozule 5%,dex 30% slowing the progression more.
The idea being in the next few yrs more drugs will slow progression and in 5 yrs a halt is possible.
I hope i was helpfull.
 

CathyP

Active member
Joined
Feb 29, 2012
Messages
91
Reason
PALS
Diagnosis
12/2011
Country
US
State
Kentucky
City
Small Town in Western KY
Welcome....Sorry you have reason to be here. I too was officially diagnosed last Dec. You would think even though no cure yet....there would be a test that could give a yes or no result without all of us being a pincushion/lab rat for months and in your case years. We are all in this together.
 

Jeanieee

New member
Joined
Mar 28, 2012
Messages
5
Reason
PALS
Diagnosis
03/2012
Country
US
State
California
City
Long Beach
Hi bat boy. I too live in s. calif south of LA and go to mozaffar. I'm a couple of years into it with fairly relentless progression. Full time paid caregiver. Full time power wheelchair. Bipap nites only. Peg surgery two months ago went fine. But zapped about 15% of my strenghth And started a series of other health issues.

Praying for a slow down.
Hoping for slow progression for you.
Jeanieee
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Do they have you on any meds that could be making some symptoms worse?

Was the balance sudden or gradual? My doc explained my falls and balance issues were caused by weakness and spasticity. Are you having more UMN or LMN issues? ( other than the atrophied arm, obviously, which is LMN)

Can you not lift your arms or are they just very heavy feeling?

Some people do not react well to so,e of the medications used for certain issues, for example, I was very weak on Gabapentin. Others do fine on it.

There are ti,es that using my walker can make my neck and shoulders hurt, but if ice or heat don't help, perhaps it's ti,e to see and ask about neck support.va multi-dictionary center should be able to help see what can help the most.

If you are falling, it might be time to start the process for a PWC. With a confirmed diagnosed, you do qualify for SSDI, after the initial 5 month wait.

Wish I could offer more answers.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
City
Southborough
batboy4111, so sorry you have found yourself here, but welcome to the forum...

I agree with notme, that sometimes the shoulder/neck issues may be a result of using the walker... I know I started using a scooter last year which made an immediate difference in my arms. I could still walk, but was falling more and holding onto the walker so much I was straining my shoulders. I was also warned of this by other PALS who damaged other muscles by not using adaptive equpment sooner. We PALS are a stubborn lot, aren't we? :)

I ordered my pwc in early spring, got it in late spring, but continued using the scooter until I couldn't stand up on my own anymore... about 1 month or 2 now. It was good to have it here, ready and waiting, so when I said that's it... it was available.

Sign up with MDA and ALSA if you haven't done so already, some of the loaner closets are amazing... and sign up for SSDI as soon as you can.

The most important thing I have found for myself is that though this truly does suck, I am living with this disease, not dying from it... there are some amazing folks on this site, though we have lost so many this year, their legacies live on through their many posts. Do a search on nearly anything, and you'll get a lot of good information. There are also other threads here for us to enjoy lighter moments, such as the Pub, Tea, and Whine and Cheese...
 

Jeff Long

Distinguished member
Joined
Jul 21, 2011
Messages
254
Reason
PALS
Diagnosis
10/2011
Country
US
State
NC
City
Raleigh
Batboy,
You sent me to Flashback Land; I was born in Harbor City and grew up in and around that area. Converted to Redneck after retirement though, so I had to turn in my surfboard and stop parting my hair down the middle!

I cannot speak to your specific issues (I am bulbar, but also slow progressing-- thank God!) but wanted to make one point.
You said "today is my 1st attempt at reaching out to those outside of my personal circle of friends & family." Outside of a college sports board, I never hit a forum like this in my life until Uncle Lou paid me a visit. That said, there are a great number of caring, intellgient people here who will be able to give you all the information and assistance you could ever need. I'm a lurker mostly and pop in from time to time to provide comic relief, but you are wise to reach out to the smart people here. Best of luck to you, and God bless you and your family.
 

rosec

Distinguished member
Joined
Aug 2, 2012
Messages
330
Reason
Lost a loved one
Diagnosis
11/2009
Country
US
State
CA
City
Costa Mesa
Hi Batboy,
My husband goes to Mozaffar too. Everyone in his clinic is super nice. I am a lurker too but lately I have found myself contributing. The support group meetings at the clinic and the care giver support group are good places to get more info and make friends. The loan closet is also a great resource.
My h has been using his bi-pap at night and whenever he naps for almost 3 years now. He is still working, from home, 3 years after he was diagnosed. I think that is what keeps him going.
 

ltbeauti

Distinguished member
Joined
Feb 22, 2011
Messages
215
Reason
PALS
Diagnosis
04/2008
Country
US
State
VA
City
Chester
Hi Batboy
I am a slow progressor too. Mine started bulbar and for years I had no symptoms except for bulbar,speech and mild very mild weakness. Then in 2010 all of the sudden my balance started being affected. (doc said weakness and spacisity) Since then I have to use a walker full time(or a small hoveround type chair). I also have left hand weakness now.
Back to you.
Like Helen suggested , please sign up with an ALS chapter near you if you have not already. You can find one here.
In Your Community - The ALS Association

Like notme said. Some PALS react differently to medications. It is just trial and error for patients, and you have to be the one to suggest to the doctor that maybe medication could be changed?
I have been taking Baclofen for several years 30mg day. Just recently I have been so very,very tired and told my neuro and he suggested cutting back on the amount to 20mg. (and maybe later even 10mg) I think it has helped me gain some strenght back. I am a little more sore and stiff since cutting back, but the trade off for me right now is worth it.
Good luck to you and keep posting.
 

eibhlin

Member
Joined
Oct 27, 2012
Messages
17
Reason
PALS
Diagnosis
08/2012
Country
US
State
ma
City
medford
Batboy,

You sound so much like me, except I'm 61. In the past year, I've gone from walking an hour every day to using a walker and having trouble walking to the bathroom. I use a wheelchair when I go out to medical appointments. I live in the Boston area. Good for you for getting a different doctor. I go to the ALS clinic in Mass. General Hospital. I have itch from Sjogren's Syndrome, an autoimmune disorder, but that's finally under control. I have urinary incontinence for 6 months, but I had a stimulator put in my bladder this week. I'm on riluzole.

Eileen
 
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