Old 12-12-2011, 02:24 PM #1 (permalink)
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Hello to all... I'm new to ALS and just registered on here a few days ago. I've been reading thru some of the threads and just want to say that I admire you guys for being so strong with this disease. I was just diagnosed this past October and I think I'm handling it okay. I'm 34 years old and a wife and mother of 2 boys. I'm still working and will try to work as long as my legs don't give completely out on me. Mine started in the lower half of my body. First in the left leg and now it's taking over the right. It started with what I thought was restless leg syndrome and then I started noticing the weakness in my muscles. The cramping and twitches started soon after and now I have paralysis in my lower left leg and foot. I have foot drop in the left foot and now it's starting in the right. My left knee is pretty messed up to. I don't know if it's from the falls I've had or the disease. I don't have control of how far my knee goes back and it sort of pops back with each step. I have some twitching in my upper arms and my hands but nothing like the lower half of my body. I've noticed some twitches in my back sometimes too. I first noticed the symptoms back in Aug. 2010 and didn't go to my GP unitl March. She done blood work and it came back that I was anemic and vitamin D deficient. She put me on some supplements and I went back a month later and there was no change in my condition. She sent me to a neurologist in April and he done some MRI's and the first EMG test. The MRI's came back normal but the EMG came back abnormal. He then sent me to Wake Forest Baptist hospital. The doctors there done alot more testing. More MRI's, EMG, Nerve conduction test, more bloodwork and some other tests I can't remember right now. It all pointed to ALS. I started seeing them the first of August this year and they gave me the diagnosis on 10/12/11. I was thinking the whole time it was going to be MS. I had read about ALS and was praying that it wasn't. I'm not sure why I got this but I'm sure God has a reason why. I just pray that I can live long enough to see my children grown. I so want to be there for them until they can take care of themselves. I'm a very over protective Mother and I'll worry myself to death...literally Thanks for listening... or reading... if you have any suggestions on what I should be doing to prepare for the future with ALS please feel free to give advice. Thanks!
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Old 12-12-2011, 04:22 PM #2 (permalink)
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Welcome to our forum family! I'm sorry for your diagnosis Sweets. You will find this group of PALS and CALS friendly and knowledgable about all things ALS. Please ask anything!
Hugs to you!
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Old 12-12-2011, 04:41 PM #3 (permalink)
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Default Re: New to ALS

Hello and Welcome! (again LOL)

BTW, what kind of braces do you have? I had a Toe Off (had to move up to the Blue Rocker last month since my spasticity broke the Toe Off!) and I have the Combo attachment for the knee going back to far problem (I think the fancy name for that is genu recurvatum). One ALS doc I saw told me that people with ALS don't get such a knee problem, but my new doc says it can and does happen when your muscles can't support the knee properly anymore (which is what my orthotist said). Glad to know I'm not the only one with the freaky knee thing!

And LOL @ the worrying yourself to death... literally. Same here!

Wish you didn't have to be here, but glad to have you anyways.

~ Sarah
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Old 12-12-2011, 05:59 PM #4 (permalink)
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Both my knee are messed up. And I had ankle sugery in 2006 after I fell and twisted my ankle. Doc removed several ganglion cyst and fused bone back together at this point in 2006 and when I got MRI on knees in 2009. I had not heard the word ALS Diagnoised in 2011 with bulbar palsy. Who knows. Refused knee sugery could have been ALS. From the beginning
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Old 12-12-2011, 08:33 PM #5 (permalink)
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Thanks guys.. I'm not sure what my braces are called. The one for the left leg comes up to my mid thigh and has joints one both sides of the knees to help support the knee so it don't go back so far. I'll have to take a picture of it and put on here. The bottom part supports the calve and ankle and go under my foot to hold it up the way it's supposed to be. The right leg brace just covers the calve and foot. Glad I'm not the only one with the knee problems either. My ortho guy says he's seen alot of ALS patients that have this problem with the knee. I also forgot to mention the spasticity I have. I can't believe I forgot that cause that's one of the first symptoms too. Anyway the cold weather we're having now really messes with my muscles. It causes them to stiffen up so bad that I can barely walk when I get cold. The more I shiver in the cold the stiffer they get. It causes me to about fall sometimes. If my husband didn't help me around I would. I have another question for you guys.. do you have bladder issues...such as incontinence? I'm not sure if this is caused by ALS or not. The doctors say it's not caused by ALS but I didn't have this much trouble before all this happened. Also does any of you go thru the uncontrollable laughing and crying? I've just started with this and sometimes the laughter and crying are not at the best times. What can I do to help these things?
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Old 12-12-2011, 08:37 PM #6 (permalink)
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Welcome to the forum. You'll find the nicest people here. We support and listen to each other. Many of us have kids too. My daughter is 12.
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Old 12-12-2011, 08:44 PM #7 (permalink)
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Hi Susan.... Thanks.
My boys are 14 and 9. They are my life. I thank God for giving such wonderful children.
It's really hard thinking about the future now. Just not knowing how long I have.
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Old 12-12-2011, 08:52 PM #8 (permalink)
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Default Re: New to ALS

Did they tell you about any trials? Check into them with your ALS clinic. A few of us are on the Dex trial until Sept but there are a few more trials out there with promising results.
Some very wise people here told me do not let this disease define who you are and we are living with this, not dying.
It's not easy but you have to have a positive outlook.
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Old 12-13-2011, 08:04 AM #9 (permalink)
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Just remember that every case is different, and yours will be only yours. Mine has moved as slow as a glacier for 4 years, and a good occupational therapist was a great deal of help. One day at a time.
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Old 12-13-2011, 08:43 AM #10 (permalink)
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Welcome aboard NCGIRL!
Ask your Doc about medication for the emotional lability. I hear you about the knee issues. I have a problem with urge incontinence as well.
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Old 12-13-2011, 09:31 AM #11 (permalink)
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Nuedexta works for the crying & laughing. Ask your neuro about it. I still cry but only when this disease gets me down - or I allow it to get me down.
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Old 12-13-2011, 11:09 AM #12 (permalink)
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Thanks everyone for your advice. I'm looking to get into the stem cell at Emory. My doctor faxed records to them and I've not heard back yet. From what I understand it's kind of hard to get into this one. I'm just scared of taking the meds to suppress my immune system. Not sure what I want to do. I'm going to ask more about other trials on my next ALS cllinic visit in Feb.
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Old 12-13-2011, 11:26 AM #13 (permalink)
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Hi NCGIRL,
Welcome to the forum, I've found a wealth of knowledge here, and it's great that everyone here understands what we are all going through.

I also have two children, 16 yrs (boy), and 8 yrs (girl)

Don't let ALS bring you down, have a great holiday with the kids.

Casey
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Old 12-13-2011, 01:45 PM #14 (permalink)
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I just checked my email and I received an email from Emory about the next stem cell trial and they want me to come in and meet Dr. Glass. What do you all know about the stem cell trials? I need help with this decision on whether to do it or not. What do you all think?
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Old 12-13-2011, 02:43 PM #15 (permalink)
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Casey, there are many new treatments undergoing FDA trials.

Our Steering Committee invites you and other interested folks to sign, and to forward,.... and if you'd like to know more about how you can do more to help with the petition please email me.
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