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Neurology (Expert Forum)
Update
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
Update
by M Hotchickenpaste, Aug 16, 2003 12:00AM
I have posted several times on this site and now would like to complete my story.
About 15 months ago I began to have pain and numbness in my hands and feet. I went to a neurologist. I had lots of tests. Almost nothing was positive and those were non-specific (e.g., elevated CSF protein).
My neurologist was patient and consistent. While he remained ‘puzzled’ at my complaints, because of the ‘non-organic’ nature of them he did keep going. At times I felt like a nutcase and was made to feel that way.
Just recently, he sent me to a rheumatologist who pretty much took one look at my hands, listened to a bunch of stuff the neurologist had ignored, and said “I think you have scleroderma.” Tests have confirmed that.
Now at least I have something to concentrate on. I thank the neurologist for being so persistent and, of course, the rheumatologist for being so direct.
A lesson that I wish to give to neurologists (and other doctors) is that a little bit of comfort can go a long way. Not once did he say to me, “I think there’s something going on but I’m damned if I can find it … it may resolve, but it may develop into something I recognize.” Nor once did he answer my question about whether this (the time, the non-organic complaints) took place often in neurology care or led to a diagnosis. Finally, some of the language doctors use (e.g, non-organic means there’s no positive, objective indication) is not shared with patients (for me, the opposite of organic must be psychogenic). So, try to be exact in terms which are common, not limited to the medical field.
About 15 months ago I began to have pain and numbness in my hands and feet. I went to a neurologist. I had lots of tests. Almost nothing was positive and those were non-specific (e.g., elevated CSF protein).
My neurologist was patient and consistent. While he remained ‘puzzled’ at my complaints, because of the ‘non-organic’ nature of them he did keep going. At times I felt like a nutcase and was made to feel that way.
Just recently, he sent me to a rheumatologist who pretty much took one look at my hands, listened to a bunch of stuff the neurologist had ignored, and said “I think you have scleroderma.” Tests have confirmed that.
Now at least I have something to concentrate on. I thank the neurologist for being so persistent and, of course, the rheumatologist for being so direct.
A lesson that I wish to give to neurologists (and other doctors) is that a little bit of comfort can go a long way. Not once did he say to me, “I think there’s something going on but I’m damned if I can find it … it may resolve, but it may develop into something I recognize.” Nor once did he answer my question about whether this (the time, the non-organic complaints) took place often in neurology care or led to a diagnosis. Finally, some of the language doctors use (e.g, non-organic means there’s no positive, objective indication) is not shared with patients (for me, the opposite of organic must be psychogenic). So, try to be exact in terms which are common, not limited to the medical field.
Doctor's Answer
by CCF-Neuro-M.D.-CS, Aug 18, 2003 12:00AM
I am glad that you have finally received a diagnosis. I agree with you that doctors need to be open and honest with there patients. It is not uncommon within the field of neurology that we can not identify the cause for a patients illness. We have learned alot, but need to keep learning. Along the way we need to continue to provide compassionate caring to our patients.
to a anti-RO & SM test. Used for lupus or rule in/out certain
conditions of autoimmune disorders. In doubt, they do a Scl-70.
Hence, Schleroderma & refer to a rheumatologist. The fact that it
had progressd to the visible point of the illness & no one saw it
is horrible. I'm sorry to hear this diagnosis went to that stage
un-noticed. There are 2 types of sclero. I'm glad you got to the
right doc now. There is special research going on in TX. Maybe
some results will be Net posted. My other amazement is that you
have been able to post several times + this update? I like many,
have tried for 2 yrs. w/ no luck. Most of the Dr. response has
been really generic though. Your disease would only be Dx in the
ofc. by symptoms. What state are you in? I wish you well & hope
you have the mild form. Join a support group. Many on internet.
But, at the same time....yes, answers can be generic or vanilla in nature.
The KEY is finding a knowledgeable, kind physician who does not give up and will refer and or consult with colleagues. But, more often than not...this does not happen.
Neurolgists are one of the biggest offenders, in my opinion.
With my own affliction in 1995, I sought the help of several neurolgists in our very large city with 2 large teaching hospitals. One in particular stood out when they sent in a teeny bopper to take my history and physical(she was an intern or a resident in neurology). She thought she hung the moon and everytime I said something...she interrupted me. With every bit of "her" information, she would run out the door and tell the lead neurologist (sitting outside the door) some information and then back in she would come to get some more. This went on for about 15 minutes and then Dr. Lead Neurolgist walks in and tells me to Take TYLENOL and I would get well.
I do not know how I made the drive home that day after the Fiasco I had just went through with a "so called teaching hospital" and the severe pain, I was in.
I felt cheated. If I had known my diagnosis depended on that ill mannered, egotistical, teeny bopper, and an uninformed/misinformed "teacher outside the door", I would of never of gone to that University. It was the biggest of the jokes.
I know her name and I hope after she graduated (if she ever did) would not practice in our city.
Doctor's Ignornace and mannerisms can put the fear of god into a person for not wanting to ever see another one.
With the Grace of God and an article in a Women's magazine, we (3 years later) flew to the Unv. of Florida/Shands Hospital and were treated like Kings. They brought in a top notch neurolgist and other specialists and we were diagnosed and helped. TYLENOL????? Ha Ha Ha Ha..........Not in my case!
Now when people state how many docs they have to see or how they were misdiagnosed or how rude and uncaring a doctor was, I totally sympathize and totally understand.
Every doctor in my opinion should take the Dale Carnegie Course and learn how to converse and show compassion. Med 101, should instill in a doctor NOT TO GIVE UP and Refer to appropriate physicians. EGO's should never come into play when you are dealing with one's life.
It is very sad................................................
God Bless and Help all those suffering.
They talk about capping Medical Malpractice Lawsuits. Our paper stated if they weeded out the bad doctors and permanently revoked their licesnses to not practice in any state, then there would not be a need for this.
Too many just get their hands slapped and told "not to do that again". Ok, Mama. )-:
Amen