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AuntSilly

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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.
 
>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 ...
 
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
 
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
 
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
 
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.
 
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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