hi - im new

[suejames]

hi my name is Jim , i dont really know if i am at the right place, i sometimes wonder if i am nuts, as i have had problems for about 11yrs now , things seem to be slowly progressing , they told me at first it , might be ms, then motor nuron disease, mystnia gravis, i gave up going to the neoroligst, for 3yrs. then my symptons are starting to get worse, i have palsy in my left eye, eye lids are drooping more, ihave a bug like feeling thru-out most of my body. my left shoulder , & chest has dropped about 3 inches on my right side, mushle spasms, plus a few more problems , i was at a movement disorder clinic , the doctor told me he could not give me any meds for my tics on the back of my head, witch makes me jerk my head a lot, he told me meds could make other things worse . i asked him what could get worse & he told me to go back to the neorolist , i am getting very frusterated , i really would like to enjoy life , i am wondering if there is other people that have been going thru the same things . i like reading from the members on this site you all seem like very good people Jim

 

[Al]

Hi Jim. Sorry about your troubles. The symptoms you describe don't really sound like ALS. At least I don't remember anybody else posting similar symptoms to what you are describing. I'd be going back to a neurologist but thy to find one that has a lot of experience with ALS and other Motor Neuron Diseases. If you are in the U.S. try calling your local Muscular Dystrophy chapter to get a recomendation for a doctor. Good luck.

 

[Beebe]

Walk for ALS in Seaside Heights New Jersey

Hi Al, Thank you for reponding. You are a grandpa ? How long have you had ALS? How are you doing? No one seems to give much info about themselves. My son-in-law asks me about other people how old they are ,how long they've had ALS , are they following a special diet of organic foods and lots of vitamins etc. I have to say Jack looks healthy this past week before that he wasn't looking too well. He's determined to fight this disease. I hope and pray there is a break thru soon! I'll write more tomorrow it's been a busy weekend. My best to you, Beebe

 

[Al]

Yes I am a grandpa. My 34 year old son and his wife have a 1 year old and they live in the Philippines. My daughter 32 is expecting Dec. 24 this year. I'm 56 soon to be 57 on June 21 and have been diagnosed'ed since Oct. 03. Use a Bipap and my hands are getting pretty atrophied and I can't walk too far and a flight of stairs is a challenge. Still drive and eat ok so I guess I'm not doing too bad. I don't follow any special diet and quit taking Riluzole a few months ago. A glass of red wine is an essential part of my diet most days. that's about it for me. As you say if you are new here it is hard to find out about people but if you go to the member list at the top of the page you can find out a bit about some members. David and I have been trying to get people to at least put their state , province or country in the profiles but most don't for some reason. Well hope we haven't hijacked Jim's thread on him. Take care of that son in law. Al.

 

[Beebe]

Al

Hi Al, I am a grandma "Nawnie" is what my grandson named me. I live with my daughter Michele and Kenny and lil Kenny , Michele is 37. My other daughter Stephanie is 34 and she and Jack live a few blocks away . We are a very close family . I had trouble posting my location . Help ! How long have you had ALS? We'll keep in touch. Thank you for info. My best to you. Beebe

 

[Beebe]

Al

Hi sorry asked the same question twice (Oct. 03 ) . Jack's Birthday is June 26th he'll be 42. Why did you stop riluzole? My Best, Beebe

 

[dana]

Beebe,
My son calls my mom (his grandma) Nonny. How wierd! Nonny isn't one of those real common "grandma" names. It's nice to know there is another Nawnie out in the world!
Dana

 

[Beebe]

dana

Hi Dana , Are you new? Oregon is God"s country , have relatives there some in Baker, and a sister-in-law in Cresswell. We were out ther many years ago. I love being Nawnie he gave me a special name. Keep in touch. Do you have ALS? Hope to hear from you soon. My Best, Beebe

 

[Granny]

Jim

Hi Jim,
We sort of got off track here, but we have not forgotten about you. Sorry you have to be here. I do not have all the same problems you have, but can understand your frustrations, especially when you seem to get the run around from doctors. I agree with Al, your symptoms don't seem to fit ALS. I hope you find an answer soon, in the meantime come here any time you need a friend to talk to. Keep us posted on how you make out, hopefully you will get answers soon.
Hugs and prayers,
Leah

 

[dana]

Jim,
The symptoms you described do not match what my dad is going through with his ALS. It probably would be a good idea to see a neuro who specializes in ALS (like Al said) and see what he/she says. I hope that you do not have this disease...it's not a fun one as you can imagine. But, whatever they do find, I hope that you start to feel better soon and that you get some answers. Sometimes not knowing what is going on with your body is more frustrating than knowing the disease that you are facing. Good luck.

Beebe,
I do not have ALS, but my dad does. He has the bulbar form and has been battling it since about April or May of 2004. He has a feeding tube and is on a ventilator 24 hours a day. He is still mobile (and the vent is portable), so he can get himself to the bathroom (with some help) and can go outside and watch his grandkids play. He spends most of his time watching tv and visiting with friends and family. He can no longer talk because of the vent, but we are working on using communication devices and he writes things down on white boards. It has been a tough road, but we are managing. I do not post as often as I would like because I am constantly chasing after a toddler, but I read the posts every day and try to post myself when I can. This forum has helped me get through some really difficult times, to which I am very grateful. I am sure you will hear from me again some other time, but like I said before, it was nice to meet another Nawnie.
Dana