New member, love this forum

[LONGSAM2]

Hi All,.....After a year of symptoms I have finally received the diagnosis I so feared-ALS. My legs are very weak and I sometimes have slurring and hesitant speech. Also have problems with fine motor coordination in left hand but that's it so far. There are no support groups in my location. I happened upon the ALS forums and it is the happiest day I have had since learning I have ALS. So many of my questions have already been answered in your forum. I have had no connections with anyone with this disease so I am delighted. I was wondering if any of you have problems with bloating of the stomach. It seems no matter how little I eat the bloating starts and I feel really full too fast. Yikes! don't take eating away from me, too. Happy to meet you all and will probably have many more questions. Thanks!

[liz]

Hi LONGSAM2 -

Glad you found us - you are not alone. Whereabouts are you from?

Liz

[LONGSAM2]

Hi Liz,.....I'm from New Jersey, age 65, ex-teacher and grandmother. Thanks for reply.

[patricia1]

What part of new jersey? I am from Flemington new jersey

[Al]

Hi Longsam2. Welcome. Are you on Rilutek? It caused stomach problems for me.
AL

[edna may]

Hi Longsam2. Welcome. Are you on Rilutek? It caused stomach problems for me.
AL
Hello Longsam, nice to meet you. Welcome Edna May

[LONGSAM2]

Hi Al,.......thanks for the welcome:) I am not on Rilutek yet. Have to see if my insurance covers. Right now taking natural stuff rto protect the cells. I am not up for any nasty side effect at this point..I'm sure I'll have many more questions. Love your answers.
Sharon...Longsam2

[LONGSAM2]

Thank you, Edna May and Liz for your warm welcome. I am from Brick, NJ. Am so glad to have people like you for support, Don't feel so lonely now. Family is grateful, too.
Sharon......Longsam2

[MtPockets]

Welcome to the best place on the internet for ALS support LongSam2. No matter what your questions may be someone on here probably has an answer. We are here for you anytime.

God Bless
Capt AL

[donnah]

Hello my name is Donna and welcome to the forum. I live in Barnegat, New Jersey and my husband had ALS. He lost his battle in December but I still come here to see how everyone is doing. This is the best place on the plant to receive real answers to the problems that ALS patients have. We discuss everything! I mean everything. So ask away and if you need anything just give a yell I'm only down the street.

Donna

[Al]

Hi Longsam2. I've always had gas and bloating problems even before this fun began and 2 weeks ago saw an ad on TV for yogurt with extra probiotics in it. They said take the 14 day challenge and see if your stomach is better. I tried it and it seems to help. I hated yogurt and puddings before but this stuff isn't bad. Got 16 for $8 at Wal-Mart. Might be worth a try.
AL.

[LONGSAM2]

Hi Donna,....so sorry you lost your husband. Barnegat is not far from me at all. Nice area to visit and live. I'm very grateful for this site and will probably have a million questions as time goes on. I broke my ankle two days ago which is adding to our problems but we're hanging in. Sometimes I feel like a black cloudf is circling above me. Thanks for your encouragement. Sharon

[LONGSAM2]

Hi Al, thanks for the heads-up for the yogurt. I think I'll give it a shot. Nothing to lose by taking it. Will let you know how it works. Sharon

[Paty]

Welcome Longsam These Are The Best Forums To Get Feedback On Als And The Other Mnd, Make Friends, Vent, Etc.

I Feel So Glad I Found Them, If It Weren't For The People Here I Would Be Crazy By Now, My Husband Was Dx With Als 10/17/05.

Paty
Husband's Caregiver Dx 10/17/05
Baja California, Mexico

[LONGSAM2]

Hi Paty,....thanks for the welcome. I go to the Forum every day to see if there's something that can help me and there usually is. They say you should know things in advance and because I have COPD I am interested in this Bipap support. I don't know how much my pulmonary guy knows about ALS and need to know information to converse with him about these procedures. The forum is doing this for me. I am so happy to have found it. Lots of luck to you and your husband. Sharon M.

[nspoc]

Hi Longsam2 -

Welcome to you! This is a great forum. AL is a terrific and supportive moderator. I have found great stuff here in the short time I have been a member.

We had a gentleman in our support group who had COPD as well as ALS - I'm sorry to hear that is your situation. Our clinic has a great pulmonologist who helped him a lot. One thing that was different for him - he had to have oxygen bled through his bi-pap at some point in his progression. This would be unusual treatment for ALS as you may know - therefore a good pulmonologist is a must.

Best of everything to you! Beth

[MtPockets]

Hello all. I'm glad to be back after my internet provider was offline for past 12 days. Just wanted to let everyone know I had not disappeared from off the face of the earth just yet.
I love you guys and gals and missed you. Good to be back.
God Bless
Capt AL

[Al]

I figured you were off visiting again or maybe out fishing. AL.

[Beebe]

Hi Sharon, Welcome, I am from Forked River, N.J. ,My son-in-law Jack has ALS. This Forum is a blessing. If you need to vent or ask a question there is a world of knowledge here. My very best to you, Beebe

[MtPockets]

Glad to be back among friends again.
I just went for another set of emg's and ncs's yesterday. The results are that the ALS is spreading to my arms, shoulder, and hands. So now I have effects from my toes to my head basically. I guess that's to be expected. May 11, 2007 will be 1 year since I received my DX.
I hope everyone is doing well and welcome again to all the new members.
God Bless
Capt AL

[CindyM]

Glad you are back with us Captain Al. I am sorry to her about your progression. Did you suspect this to be the case or wre the test results a surprise? Cindy

[MtPockets]

Thanks Cindy,
I suspected there was progression due to spasms and loss of strength in the arms. It just kind of surprised me how much detoriation the tests showed in the past year in both my legs and my arms. The area of C3, C4, C5 have now gotten involved. I guess each of us progresses at different speeds. I know I am having more trouble now with swallowing my meds, especially the large dry ones.

I think yesterday was a reality check for me. BUT, GOD is still in control and only He knows when our time is up and it's time to pass on.

My wife's denial has finally passed, and the reality of it all has come crashing down on her. I've tried to get her on here to talk to some of the other caregivers, but she still balks at the idea. She spends a lot of time up at night worrying about me and I wish she would talk to some of you ladies to help her through these rough times, but that's her decision.

God Bless you all and have a great week.
Capt AL:)

[liz]

Now that I've been diagnosed, I'm not sure that I'd submit to any more EMGs or nerve conduction tests. Every time I had them, I noticed a sharp increase in fasciculations lasting for several weeks. Has anybody else experienced this?

[Al]

Hi Liz. Now that you mention it I did notice a lot more fasc's after last tests. AL.

[MtPockets]

I just recently had the emg and ncs both done this past Monday and I have had an increase in both legs and arms with the fasciculations, and now they have spread to my face. I did not have any around my face before the tests.

I think you have a good point about the aggravation of the nerves and muscles causing more fasciculations.

God Bless
Capt AL

P.S. I feel about like the cat below. Spastic all over.

[CindyM]

I'm still droopy-eyed form the last NC test they did back in March just above my eyebrow. I'd sort of figured this was normal. Interesting that you've allmost decided to not have any more emgs, Liz. I'd be afraid I would need the information in order to help make long term plans. But then again, this is the person who has visited this site a milllion times because she might have mnd. :roll:

[JACKIEMAX]

i was a new member myself just a few short months ago, and i can tell you without any qualms that this forum has been a lifesaver for me. the last emg my husband had they told him that every nerve and muscle tested were abnormal.....we go back for his second breathing test next friday to see how badly he has deteriorated insofar as his breathing is concerned.

i see an awful lot of people in this particular thread are from new jersey. aren't there any tennessean's in this forum????

there are no support groups anywhere near me so, as my husbands sole, and soul caregiver, i have no one to discuss my fears and anxieties with, or ask a million questions of except this wonderful forum.

thank 'you all'.....

or should i say 'thank y'all'. a good southern term.

jackiemax

[pfowler44]

Hello
I am a former Buckey. But now I am a HOOOOOOSIER!!!!!!
lol Pat

[Al]

In Canada we spell that Hoser.
Al.
Probably the Canadians will be the only ones to get that one. EH Bob and Doug?

[pfowler44]

I get it!!!!! I get it!!!!!!
I no that we all do alot of writing about our problems but it is nice once in awhile to have a good laugh.
Pat