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CindyM said:
Hi Lilly-I am glad you found us, and you are welcome to stick around regardless of what is causing your symptoms. Did you take my advice and go out with friends this weekend? How are you celebrating Thanksgiving? Take care and be good to yourself! Cindy

unfortunately no, i have to study for the SAT coming up in december =(
if you don't mind, could you please explain the presence of "excess saliva" in ALS patients? i am confused as to whether it refers to the buildup of saliva in the mouth due to difficulty swallowing or simply an abnormally high rate of saliva production? for the past couple of days i've noticed an increased flow of saliva in my mouth, which makes me swallow several times a minute because i feel like i might drool otherwise. it's really strange :confused:
and just today i've developed a horrible cramp in my left calf. the pain lasted about a couple of minutes and went away on its own. other than that, i've also noticed some tremor in my legs. i mentioned it to the doctor at my physical today but she didn't seem too concerned. :?:
sorry about the questions again, but i'll be staying on my toes for a while until i see the neurologist (and hopefully get to the bottom of things) on dec. 8.
thanks for all your help and happy thanksgiving!
 
DavidGL said:
Some people get the rash in a big way. Some in a small way. You may never have noticed it (could've been on the back of your neck etc).
Some people really go down with a "flu", others just put up with a "cold". The reactions vary quite a bit and so do the symptoms.

It is definitely a must-check item as part of the als rule-out. Just be careful that you don't become obsessed with thinking that it is the cause if the tests show otherwise. There is a sizable group out there (even some physicians--two of which have lost their licenses) blaming all of their hard-to-diagnose ills on lyme disease, even when multiple tests show they don't have it.

If you see a neurologist, I am sure he will request the lyme test--just make sure he does! :-D

i actually mentioned the lyme test to my doctor today but she didn't seem too concerned about it :?: instead she ordered a blood work checking for general infections and arthritis.
hopefully the neurologist i am scheduled to visit in december will be more flexible and open to the possibility of lyme. thanks again for all your great suggestions :mrgreen:
 
liz said:
It is OK Lilly. It is very understandable to get stressed by the unknown. You are doing good by folowing through with all of your doctor appointments. Don't be afraid to tell your doctor ALL of your questions and concerns.

Liz

my primary doctor didn't seem very concerned at all about my symptoms when i went to see her this morning for my physical. hopefully my trip to the neurologist this december will clear things up!
 
Lilly -

Hang in there. It may take more than one more appointment to sort this out but stick with it. I wouldn't be surprised if you also end up referred to a rheumatologist to check out the arthritis angle.

Is your mom or dad speaking with your doctor too? Sometimes it can help to have someone with you who can also listen to what the doctors are saying because it is harder for us to listen when we are anxious or scared about what may be wrong with us. My husband comes with me to all appointments to do with my ALS for this reason.

Good luck. I hope you find answers soon.

Liz
 
Hi Lilly- Yikes! December! That means next week. I bet you are going to ace those tests, honey! And a hidden benefit is that if you focus on studying and let the docs worry about your symptoms you will gain a little peace of mind as well as high scores. When is the SAT test? Do you plan to go to college?
 
Lilly:

I am sorry to hear about what you are experiencing. I reviewed some of the responses you have received on this forum and they contain some very sound advice. It often takes a considerable amount of time for things to unfold enough to clarify the diagnosis. I have spent about a year and a half, seeing several neuromuscular specialists, trying to find a clear diagnosis. Medicine is less than a perfect science.

I am very familiar with the Rochester medical community. I lived in Rochester for over 30 years before moving to Arizona four years ago. If you are pursuing a neurologic opinion consider seeing Dr. Richard Barbano at Strong (University of Rochester Medical Center).

I wish you well.

Mark
 
to Lilly

Lilly-
just some ideas:

What have you been doing different (after the symptoms started)
versus before-changes in diet,where you live,clothes,pillows,pets,
medicine,alcohol,etc? possible allergic response to stuff like mold,
soaps,etc? Have someone your family help 3 heads are better than 1
best of luck! paul

https://www.alsforums.com/forum/images/icons/icon7.gif
Smilel
 
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