Diagnosis

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BLPhill

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Joined
Oct 10, 2008
Messages
211
Reason
PALS
Diagnosis
09/2008
Country
US
State
WA
City
Tacoma
I visited Virgina Mason Today. Dr. Ravits Neuromuscular specialist in Seattle. He has changed my diagnosis from PLS to ALS


Betty
 

crystalkk

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

I'm sorry to the change in diagnosed. What made him change the diagnosed did you have an emg or something?
We are here for you...
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Betty, I'm so sorry ... I know this is a shock; it will take you a couple of weeks to wrap your mind around this diagnosed.

Blessings
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Betty,

I'm sorry to hear of the change in the diagnosed, too. My thoughts are with you tonight.

Zaphoon
 

BLPhill

Distinguished member
Joined
Oct 10, 2008
Messages
211
Reason
PALS
Diagnosis
09/2008
Country
US
State
WA
City
Tacoma
He said because of progressive left sided weakness, and my speech which is all but gone. everything is progressing rapidly.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Betty, I'm sorry! Maybe things will settle back down for you.
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
Betty,
I'm so sorry for the change in your diagnosed. Try to rest good tonight, and hope you can settle into your "new normal" soon,
I'll keep you in prayer,
-b
 

softpill

New member
Joined
Mar 30, 2009
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
WA
City
Tacoma
Dear Betty,
I see that you are in the Tacoma area.......I am searching for a good neurologist to look at my husbands symptoms without running all over town for months on end! Do you know of anyone you could refer that is knowlegable of ALS symptoms?
My husband is having strange tounge symptoms. One night he was reading out loud and his tounge got extremely tired as he puts it. Went away for a week , then came back after he was singing in our cong. on Sun. The same day, his foot went up by itself at the ankle. He thought I had put my foot under his and lifted it. Not the case...... Has alot of other strange symptoms as well. Not sure what to think, but whenever I research , ALS keeps coming up? He also was in the military and I read they have a higher incidence of ALS....
I may just be worrying for no reason, but I would like to get a good docter who knows a thing or two.
I am sure your diagnosis was devistating, but still good to know what you are dealing with.
If you have any help you can give, much thanks!
I pray you can find peace with your difficult diagnosis.
Marie
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
Country
US
State
USA
City
Any
Welcome Softpill, cute screen name, sounds like symptoms of lot's of things, see a doc, and get to the bottom of all of this. We are here for any questions along the way.
Betty sorry to hear of your diagnosed. change, like Rose said maybe things will settle down. Did he do an emg? if not, pls can cause loss of voice and such, maybe you will slow down in your progression, keep thinking positive, we all understand were you at.
 

rocmg

Distinguished member
Joined
Dec 29, 2008
Messages
388
Reason
PALS
Country
UK
State
N/A
City
N/A
betty... I'm sorry about the change in diagnosis. however, you've been doing pretty well these last few years though, right? well, don't let anything the doctors say throw you off kilter. hold steady. my thoughts are with you and your daughters.
 

BLPhill

Distinguished member
Joined
Oct 10, 2008
Messages
211
Reason
PALS
Diagnosis
09/2008
Country
US
State
WA
City
Tacoma
HI Marie

You will need a refferal to go to a good neurologist. I go to a internal medicine DR in Tacoma named Daniel Ginsberg. He is in Allenmore clinic. He is knowlegable in ALS symptoms.

I have been to several neurologists in tacoma and my thought is, don't waste your time. If you read my pasts posts you will see how much trouble I have had in Tacoma with drs, hospitals and neurologists. The only dr I have found with half a brain is dr Ginsberg.

Let me know if I can help you with anything.
 

softpill

New member
Joined
Mar 30, 2009
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
WA
City
Tacoma
Thamks so much!

Thank you so much Betty for your reply and the name of your Doctor! I have had this sickening dread in the back of my mind about my husbands symptoms. I feel the way I did right before my dad was diagnosed with lymphoma, then hit again with lung cancer. He died a year and a half ago. Funny how I just knew in my heart something horrible was really wrong? I sure hope that my instincts are off this time but I want to be realistic and approach this head on ! My feelings are, the sooner I can help him figure out what the problem is, the sooner we can start planning any changes he will need to make, see about getting aid from the military ect. ect. If it is not something horrible like ALS, then agian, the sooner we can rest our minds. I just cannot stand the Doctors who run you around town and waste our time and MONEY! So once again, I am so thankfull for your taking the time to reply to my question.

Take care of yourself !
Sincerely, Marie
 

BLPhill

Distinguished member
Joined
Oct 10, 2008
Messages
211
Reason
PALS
Diagnosis
09/2008
Country
US
State
WA
City
Tacoma
Hi Marie

anytime I can help. I am happy to do so. Keep me posted on your husbands condition. I currently have a wonderful team of drs at the university of washington, If you have to get a refferal, this would be your best bet. In my opinion they are outstanding. Take care and let me know if I can be of any assistance to you and your husband.
 
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