I would like to introduce myself

lisa g

Active member
Joined
Apr 17, 2019
Messages
67
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
My name is Lisa and I was diagnosed 1 week ago with ALS. My neurologist is such a compassionate person, she cried with me while giving me the diagnosis . Her and her husband are a neurologist team. While they suspected ALS the EMG confirmed it. I would like to say that they were fantastic with her husband staying late to preform the EMG because I was getting ready to go out of town for 3 months.

I was put on Riluzole which seems to be helping. My doctor although was not happy that I would be away so long told me if I felt good go but if I felt any new symptoms to come back home. I am still mobile and walk 3 1/2 to 4 miles a day.

I'm still trying to wrap my head around this diagnosis and petrified of the unknown how it's going to progress.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,581
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Hi Lisa

I am so sorry you have to join us but welcome

I am glad you have neuros you trust. We do encourage second opinions for everyone with a neuromuscular specialist.

Glad too that you can travel. Enjoy! Do pace yourself though. A lot of us find conserving energy makes us feel better. Some of us think that avoiding overexertion helps with progression. My clinic rule is that is it takes more than an hour to recover fully from exercise it was too much. I apply this to activities as well.

Above all stay safe! You don’t say where your symptoms are but don’t fall!

I look forward to getting to know you
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
67
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
Thanks for the welcome for a group I'm sure none of us wish to be part of.

My symptoms now are mild. I am still walking and doing everyday functions, and am trying to keep it that way as long as I can. I am a vegan and try to eat as gluten free as much as possible so I think that mI got be helping with my symptoms. It's just hard coming from not knowing much about als than immersing yourself to get as much knowledge as you can. I read so many conflicting things.

My neuros are encouraging me to get a 2nd opinion. They do have hands on experience with als, my neuros cared for his father that had als.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,344
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
I’m also sorry to have to welcome you, but welcome! This is a supportive group with lots of good information. Feel free to ask any questions. Looking forward to getting to know you better.
 

azgirl

Senior member
Joined
Jan 20, 2014
Messages
956
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
we are always sorry to welcome a new member.

the shock of getting this diagnosis takes awhile to work through,. We will answer your questions as they come.


go enjoy your travel, but do pace yourself.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,508
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
Lisa , yes, it is so important to a get a second opinion.

Let us know where you may get your second opinion being you are
from Florida. There are some excellent facilities there.
 

beauty4everyone

Distinguished member
Joined
Jul 5, 2018
Messages
134
Reason
PALS
Diagnosis
04/2018
Country
US
State
Ville
Hi, Lisa -
So very sorry you are ill! Living as fully as one can in each day while preparing for the future helps a lot. ALS is an ongoing, learning experience. Hold fast.
The love of family and friends makes a big difference.
Have a lovely vacation. Enjoy the beāuty of each day.Take care and may blessings abound. B. 8)
 

Attachments

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,345
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Hi Lisa,

Here are the ALS centers located in Florida. There is at least one that is very close to you. I would encourage you to make an appointment now rather than wait until your return. Some have long waiting lists.

It's important, especially in the beginning, to not only get a second opinion but to find a clinic nearby that can help you get needed equipment, when necessary.

http://webfl.alsa.org/site/PageNavigator/FL_8_Clinics.html
 

dldugan

Distinguished member
Joined
Oct 5, 2018
Messages
203
Reason
PALS
Diagnosis
09/2018
Country
US
State
illinois
Lisa,

Sorry to have to welcome you here, but this is a good place for you to be. Unfortunately at some time you will fall. ALWAYS keep your cell phone charged and with you.
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
67
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
I do have a question for anyone, to get a second opinion at either mayo or shands do I need my neurologist to make the referral? Or am I able to navigate through them myself?
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,522
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Just a caution that depending on your plan, in order to have the visit/tests reimbursed, HMOs in particular and even some PPOs will require your primary care doc or a neuro that your PCP referred you to, to refer to a 2nd neuro clinic. Do not rely on the clinic you make an appointment with to point this out -- check your plan documents in print or on line, or call if you are not sure.

Best,
Laurie
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
164
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
Welcome Lisa!
When I needed a second opinion, my PCP helped to make the appointment for me. They were able to communicate the need for a timely appoiintment, and not a 3 month wait. I was very glad to have this second opinion and kept that neurologist and not the fiirst.
Cathy
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
67
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
I am hopefully on my way to get a second opinion. My neurologist in Florida had suggested that perhaps I could go to Cleveland Clinic being I'd be in Ohio for 3 months. I told her that my insurance wouldn't cover me since my HMO is for the state of Florida. My husband wanted to pay out of pocket so I could at least get evaluated at CC. I called Humana to see if there was anything I could do and was told that due to the seriousness of the diagnosis my Florida neuro could file for a special request referral with my insurance and if approved they would cover me in network with my insurance. I called my neuro in Florida yesterday and gave them the information they needed to ask for this referral and they got right on it. I'm keeping my fingers crossed that I will get the approval I need.
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
164
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
Lisa, if you are going to be in Ohio and thinking about the Cleveland Clinic, may I highly recommend University Hospital dept of neurology. Doctor Katirji is the head of Neuromuscular Diseases. He teaches at Case Western Reserve Medical School. He is fantastic and came highly recommended to us. He runs ALS clinic for PALS.
If you want contact information, let me know.
Where in Ohio will you be?
Cathy
 
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