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comfortable with ALS

Distinguished member
Joined
Sep 24, 2007
Messages
111
Reason
Other
Diagnosis
n/a
Country
US
State
mi
City
st.clair shores
Hello everyone its Jenny just wanted to let everyone no how it went today at docs. He def saw my twitching. Checked reflexes. strength etc. He told me he didnt think it was Als but i will continue to see hem I will be getting a blood test that will be sent to the mayo clinic to check for potassium, i hope iam saying that right, other things to lymes. He told me out of a 1000 patients he has only 2 came to him with just twitching then later turned to als, so yes there are those rare cases. I told him about this forum and asked him if he thought i was crazy like a lot of people on here think i am and he told me absolutley not. He told me to help everyone i can and talk about my problems.His name is Dr.newman at henry ford hosp. in Mi very good doc works with als patients only. So i will continue to stay on and let everone no how my condition presents. He told me usually its like weakness associated with twitching what a lot of you on here have stated. I could go on ans on about today but i dont want to bore anyone thanks a lot jenny
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Jenny ,

I'm happy to here that and you sound more relaxed now.

You would not be boring us if you told us more about today. We might even be able to learn something
from what your nuero told you

crystalkk
 

ltr

Senior member
Joined
Feb 11, 2007
Messages
690
Country
US
State
NY
City
Elmira
I agree with Crystal and I am glad that a doc took you seriously and is going to keep an eye on your situation. Good luck.
 

kathmc

Active member
Joined
Jun 9, 2006
Messages
51
Reason
PALS
Diagnosis
02/2006
Country
US
State
ky
City
lexington
als clinic visit

congrats,

I just have to say the lyme test is not that reliable--tho no Dr. will agree. In case this is Lyme or anything else, please strongly consider keeping a diary of symptoms no matter how crazy they may sound. This can be a huge help down the road if your problems do not go away.

I had crazy & non crazy symptoms for nearly 8 years. A Dr. ran a lupus & lyme test & lyme came back positive. It took over 6 months of antibiotics b4 a difference was noticed. Two more years of treatment b4 felt human. A diary then & when the PLS symptoms started would have been so helpful when going to dr..

I don't know what state you live in but know from a retired health department official in Ill. that the huge volume of positive test results are deemed false positives thus negative. Official stance when Republicans in office was there was no lyme in Ill. It's hell to be sick w/ a politically denied disease.

kath
once from Ill, now in Ky.
 

pldo

Distinguished member
Joined
May 30, 2007
Messages
146
Reason
PALS
Country
uni
State
unknown
City
unknown
I could not get a doctor to do a lyme test in GA because there has never been a case here supposedly. Then I heard that was a crock of you know what.
 

Sandy Loam

Member
Joined
Sep 7, 2007
Messages
17
Reason
PALS
Country
US
State
Oregen
City
Salem
I'm proud of you Jenny

Jenny,
You did it.
I do not think anyone thought you were crazy, but several of us (self included) were becoming progressively more worried about your current mental strength.
Worry is like trying to push a very big stone up a very long hill. It simply wears all of us down.
You rose above all the obstacles and followed the next step.
I'm very proud of you.
Keep the faith
Out
Sandy
 

greg175csp

Member
Joined
Sep 22, 2007
Messages
26
Reason
PALS
Diagnosis
5/12/2006
Country
US
State
WV
City
Harpers Ferry
jenny,
I'm glad to see you're back from the doc. I'm also happy to hear you have a Dr. fighting with you to find out what is going on with your body. Hang in there and keep us posted !
 
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