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AuntSilly

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Joined
Jun 14, 2014
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Reason
CALS
Country
US
State
VA
City
Stafford
Been to multiple specialists, multiple pokes, even Mayo...and more to come over the next months as I wait for the "appropriate" 48 or 60 months necessary to "achieve" the diagnosis. Still no one wants to say ALS/PLS; clearly, motor neuron symptoms and clinical signs. Only PM&R specialist has courage to state it's upper motor neuron. Although the second opinion neurosurgeon said he "would bet his house it wasn't the spine" and recommended neuromuscular specialist who 18 months later has yet to see me as patient.I thank God everyday for my pelvic floor physical therapist and my PM&R specialists who are walking the walk and have the courage to step forward with me. Baclofen, valium and soon botox for spasticity. My primary care physician is tremendous support because she actually is KIND.

If I told you what my profession is there would be an incredible response to this post. I saw a neurologist this week who actually shrugged her shoulders. What! She needs to get out of medicine NOW. There is more right about each one of us then what's wrong with us. I wish most of these folks would get out of medicine. It would be a better world.

Find a primary care manager who cares and hey, even "loves you" for the beautiful child of God you are, not a "case."

Oh, they say the last to go is cognitive or executive function. The last for me will be my sense of humor. I am made in the image of God and he laughs the loudest.

I am going to continuing caring each day for the folks before me for as long as I my hokey pokey cooperates. I just don't think specialists are worth the diplomas they plaster on their exam and office room walls...and certainly not worth the money.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,598
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>If I told you what my profession is there would be an incredible response to this post. I saw a neurologist this week who actually shrugged her shoulders. What! She needs to get out of medicine NOW.

quack, quack! you should ask me my thoughts on neuros ...maybe not.

got to a proper specialist or clinic. ALS in NOT a no brainer ...
 

dalvin

Senior member
Joined
Sep 12, 2013
Messages
956
Reason
PALS
Country
US
State
va
City
richmond
Aunt Sally, see if you can get a referral to the ALS clinic at MCV. Dr. Voda is good. Only about an hour or so from you. Another option is the clinic at UVA. Going cross country from Fredericksburg would be about an hour and a half
 

SMP51

Senior member
Joined
Oct 31, 2011
Messages
677
Reason
CALS
Diagnosis
11/2010
Country
US
State
FL
City
Fort Walton Beach
our GP is wonderful, the neurologist he sent us to takes great care of all Steve's needs and when we went to our specialist at the als clinic they were quite on top of everything. perhaps we've just been lucky.
but your right once you get past diagnosis and the dust settles then a caring GP to make sure your needs are met may be all you need as long as they are up on the challenges you will be facing
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
959
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
I am sorry that you are having this experience. We have had a positive experience with all 5 neurologist that we saw. Now I admit that some don't have a great bedside manner, but many times I think it is because they are so busy that they try to keep things short and concise. Of course there are always the ones that need a personality or compassion implant, the ones that have a god complex. I find telling them how their actions make you feel belittled often helps a lot.

Paulette
 

adozi

Distinguished member
Joined
Dec 28, 2011
Messages
233
Reason
PALS
Diagnosis
03/2012
Country
US
State
KY
City
Louisville
I had one bad experience with a neurologist. She told me, surely God wouldn't be so cruel as to give me epilepsy, an arteriovenous malformation, a stroke, AND ALS. And she was an ALS specialist! Then i asked for a riluzole rx, a second opinion, and checked her notes, and she'd written, clinically probable ALS. Personally, i wish the medical profession would leave God out of it. That's not the reason i switched doctors, though. She just wasn't responsive enough, and when her diagnosed was confirmed at mayo, she wasn't at my first clinic. I'm glad i switched, because i got an excellent, young doctor, who took me seriously and responded to my questions.

ALS is admittedly difficult to diagnose. And neuros have different specialties, so it is sometimes difficult to get them to think outside their particular specialty. But you probably know that.
 

Diane H

Senior member
Joined
Sep 28, 2013
Messages
650
Reason
PALS
Diagnosis
11/1985
Country
US
State
IN
City
Fort Wayne
Think about the background of a top medical specialist, especially one in the very complex, challenging and probably impossible to know completely fields, such as neurology. These specialists were the brightest in their class in elemetery and high school, probably labeled as geeks and probably without any real peer group to learn typical communication and relationship skills. In college and pre-med, still at the top, still not a normal college experience, and already lacking in people skills. Med school, a more equal playing field for most doctors but not necessarily for those who had the high intelligence, and drive to go on to a challenging specialty. So we find a range from incompetent specialists who just don't know enough, to brilliant ones with lousy people skills. I believe they all care or they would have escaped the face to face discomfort for a patient free medical area such as laboratory research, teaching, pathology, administration, etc. All this is a big generalization but there is truth in it.
 
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