posted
I had my last referral visit to the neurologist. I went through all of the tests - MRI, blood work, visual screening, nerve impulse, hearing, etc. All normal.
I walk in his office to talk to him about how I'm feeling, and he picks on me. He says "I see you haven't cut your hair, yet". (I have beautiful long, blond hair to the middle of my back). "What are you trying to do, be young? How old are you - 28?"
I say "See, it's working already. I'm 38". (Nothing's more flattering to a woman approaching 40 than being told she looks like she's in her 20's. But that's another story.)
Since the tests all came back normal, he doesn't know what's wrong with me. I tell him that I'm pursuing Lyme. He laughs at me and tells me that I've been tested for that and came back negative. If I had Lyme, I would have been positive. Besides, it's way too soon for me to be exhibiting the neurological symptoms of Lyme because that comes in the later stages of chronic lyme.
I tell him not according to what I've read and been reading. Most people test negative for Lyme, eventhough they are positive because the tests are inaccurate. And the neurological symptoms can come right away. I know my body and my gut instinct is telling me Lyme.
He still thinks that I'm stressed out and over worked and wants to put me on Zoloft. No thanks.
He's going to keep me on an open call basis and will check back on me in 3 months. I will keep him posted. Meanwhile, I off to see the wizard (LLMD).
Doctors.
Cinder Posts: 60 | From USA | Registered: Nov 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
"you havent cut your hair yet" that made me laugh!! Now, what did he mean by that comment...
My neurologist was an odd duck..... he had one of those voice activated computer programs...so he didnt have to type. During my 2nd visit...he says my name incorrectly...and is frazzled...then asks did i say your name correctly...i smile and say nope...hehehe... The best was when i was in the waiting room and he announces i have a severe disc herniation...the whole room heard him!! He was a real nervous guy...didnt listen to my symptoms....thought i had migraines caused by my neck....there was no other explanation. I was having my EMG done and the nurse at the hospital confirmed that he is a duck...she called him a money maker...only cared about money...and complained about his wife leaving him!
My PCP said that most specialists are like him~ well hes the only specialist i have seen that was that wacko!!!! I can stil hear him saying next line into his mic instead of typing it.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
At my initial visit with the neurologist, he suggested that my hair was the culprit for my painful, stiff neck and headaches in the back of my head.
I looked at him like he was nuts. I've had long hair for 15-20 years. That's why he asked me why I haven't cut it yet.
Not cutting my hair - I like it the way it is.
Cinder Posts: 60 | From USA | Registered: Nov 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
There is a wealth of info at www.columbia-lyme.org that I printed out and took to my neurologist. I saw 4, and the last one was the worst. I think he was quite surprised to get Dr. F's report on me from Columbia University Medical Center stating that lyme WAS the most likely cause of my issues, and I needed to be on IV antibiotics because it had affected my CNS!
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Your post made me laugh. I thought I had bad luck and it was just me getting all of the quack neurologists.
1st neuro- After consulting with another doctor in his office over my MRI results... "Well, we don't think the lesions in your spinal cord really look like MS but we don't know what else they could be so we'll just say that you have MS"
2nd neuro- "I see that you wear glasses.. when you had the blurry vision did you have them on or off? Maybe you just weren't wearing your glasses."
3rd neuro- In the middle of our first office visit, he answered his cell phone, had a 5 minute conversation (on MY time) with a woman he had obviously just met and made a dinner date for that evening!
4th (and FINAL) neuro- "You have quite a list of symptoms going on... I think you may just be depressed- you know that depression can make you feel like you are sick so it's probabley nothing to worry about."
UGH! No more neurologists for me, thanks.
Posts: 21 | From Connecticut | Registered: Nov 2005
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posted
I've had a lot of neuros over the years - and I agree, they are all wackos! Put them right up there with pshycologists - who went into the professions because of their own problems!
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
Let me chime in on this one. I was so excited to get an appointment/referral to a neurologist at a nearby teaching hospital in St. Louis. What a disappointment. Went 3 times, she wouldn't even consider anything but migraines. Every symptom of Lyme that I had was put into the migraine category, she was sweet but wouldn't budge for anything. Later I found out she was conducting a huge migraine research study. Hmmmm....do you think she was looking for candidates? Posts: 460 | From Illinois | Registered: Aug 2005
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posted
Does anyone know of a patient of any kind who was actually helped by a neurologist? Getting the impression they just document the decline.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I saw a neuro just today. He was nice to me. In addition to all my horrible neuro problems I have a horrible rash. He had a very concerned look on his face when he looked at the rash and said "you really ought to get that biopsied" It was the look on his face that was funny.
Posts: 340 | From Ohio | Registered: Oct 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
What a great thread.
Yeah, they're goofy. Stubborn. And sometimes outright mean.
My neurologist:
"I szink you have migraines. Ve just need to find your triggers." (tho brain lesions were way too big - up to 5 mm - to be from migraines, per radiologist.)
"Vot? You got ticks in Shingletown?" He lives about 15 miles from me in similarly wooded area in an 'endemic' area of California and doesn't know we are endemic here. Duh.
"Your EM rash could be allergic reaction to tick bite." Yeah, right.
"I never heard of dis 'IGenex'. Vot is dat?"
"Ve don't need de Western Blot unless your ELISA is positive."
"I szink you having small seizures." (when trying to explain why I am so disoriented I am lost in my own neighborhood and can't find my own turnoff.)
"Your doctor overtreating you. Vot is his name?" [reaching for pen and chart] (When learning my LLMD has been treating me for Lyme)
"I szink you have MS." (lesions, abnormal evoked potentials)
"I don't szink you have MS." (elevated proteins but essentially normal spinal tap)
"If you do have Lyme [said sarcastically after seeing CDC positive IGeneX results], all zese brain lesions vill go away ven ve do another MRI." [not true, research says about half of em will go away on average.
If you have Lyme, do not spend a lot of time with a neurologist unless he's Lyme literate. They are only going to VEX you!!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
"Michelle," Thanks for making me laugh!!!!!!!! It sounds so much like my Neuro. "Robin"
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I just saw one for the first time a few weeks ago and goofy he was. Must be requirement for neuro schooling acceptance.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Some of them seem to think examaning a patient for ten minutes is enough to diagnose them, which is rediculus. When I go to the doctors for a cold, they can't even diagnose me in ten minutes.
Neurologists need to be educated about lyme or many lyme disease patients could go undiagnosed, for some time.
Posts: 11 | From N. New Jersey | Registered: Nov 2005
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Some of them seem to think examaning a patient for ten minutes is enough to diagnose them, which is rediculus. When I go to the doctors for a cold, they can't even diagnose me in ten minutes.
Neurologists need to be educated about lyme or many lyme disease patients could go undiagnosed, for some time.
Posts: 11 | From N. New Jersey | Registered: Nov 2005
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staying afloat
Unregistered
posted
You know, there's a "theory" that quietly circulates in medical schools: A physician specializes in the part of the anatomy which troubles or perplexes him or her the most.
quote:Originally posted by staying afloat: You know, there's a "theory" that quietly circulates in medical schools: A physician specializes in the part of the anatomy which troubles or perplexes him or her the most.
Does this ever speak volumes!
Well, that would be true, except for the male gynocologists!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Well, that would be true, except for the male gynocologists!! [/QB][/QUOTE]
Lymetoo - Now thats funny
I just saw my neuro. He is a nice man who continues to write scripts for topamax which keeps me sleeping, masks a good bit of lyme pain and keeps the lyme fat away (dropped 40 lbs since April). I also don't have migraines anymore. We have an agreement, he doesn't treat lyme disease and I don't ask him to treat me for lyme disease. He says that would complicate his life. I do offer him a copy of Dr B's guidelines each time I go in case he changes his mind.
So far he has refused but I figure maybe someday.
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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Loribelle
Frequent Contributor (1K+ posts)
Member # 6293
posted
T'was a neurologist who diagnosed me with Lyme disease. My GP refered me to him for Bell's Palsy and siezures. He ordered several blood tests including Western Blot (through Quest) and wrote my GP a letter giving his opinion that I have Lyme Disease and should be refered to a Lyme knowledgeable doctor for treatment immediately.
My GP chose to ignore that letter and not to share it with me either... I found out 6 months later, accidentally.
SO, off on a tangent I guess, but MY experience with a neurologist was not the same as what the rest of you are sharing. I had to stick up for at least one! Posts: 1149 | From southeast iowa | Registered: Sep 2004
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Well, since this thread has been brought around I thought I'd add to it.
A neurologist diagnosed me, as well, immediately! I was given a diagnosis of demyelinating disease while she did a rule out diagnoses.
I had a bad rection to the tofranil and some anti-inflammatory she gave me and was hospitalized by the end of the week so all the tests could be run. I was started on IV Rocephin right then.
(however she also botched the Lumbar Puncture causing my 3 day hospital stay to last 12 days)
All that said she was goofy and negligent as heck. At one point I told her the sleeping pills she gave me left me too hung over and she said bring them in she'll take them. Um... have a drug problem, doc?
Anyway she did diagnose and start the IV but neglected to pay any attention to what she was doing. I wound up with a very bad fungal infection for which she was giveing me steriod cream for the itchy rashes (and ignoring the rest of the fungus that had taken over almost everywhere).
I went back to her and said I feel truly awful and hypoglycemic. She loked at last month's lab resilts and said, "Well, your blood sugar was 40." Um... you'd think someone would call with that type of result.
I never went back, they never returned my phone calls. I was so ill the IV company was worried and got me into see a truly great LLMD the next day. Boy do I miss him. Dr T, if you're out there...
I imagaine the brain dead neurologist is now either in drug rehab or has been burned at the stake by angry patients. If there's still a female Dr M in Englewood, NJ, steer clear she's whacked. (or should be)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
I saw my neurologist twice and I will never go back to him!
My daughter took me to see him after months of neuro symptoms and a two month wait for the first appt.
Once in an exam room, I began crying uncontrollably...with some relief that I was finally to see a neurologist. I was exhausted and I had been shaking and "buzzing" for so long, not having a clue what was wrong. I stuttered and could barely walk.
The first thing the neuro doc said was, "Why are you crying?" This started me wailing in earnest and I could not stop. My daughter attempted to explain to neuro (who looked as if he didn't need to shave yet.)
Upon listening to my litany of neuro complaints, doc said he'd order a CAT Scan and a nerve conduction study. We asked about MRI and he said, "Do you realize how expensive these tests are?)
DUH!!!! I have insurance, Medicare HMO, and I realized that he was thinking about how he could make a case with them that tests were needed.
I DID get MRI along with other tests and my follow-up visit with neuro doc was as bad as the first one. "The tests came back normal so you do not have a neurological problem."
Crying so hard I could not catch my breath. Doc looked disgusted and very uncomfortable. I mentioned Lyme and he said there is no Lyme in TN.
This visit set me back for a very long time.
Daughter smart enough to see my emotional state was dangerous. Made emergency appt. with psychiatrist. Psych doctor took one look at me, said I was totally depleted and said I needed to sleep.
Psych doc prescribed Seroquel for sleep and I got the first night of good sleep that night. My neuro symptoms slowly went away, with some remaining but they were tolerable.
Neuro doc had run Lyme test (ELISA) and later sent me a letter stating, "You do NOT have Lyme disease."
I will NEVER go back to that neurologist or any neuro doc unless he/she is Lyme literate. Do any of them exist????
Telling my story to warn others not to put much stock in getting help through neurologists, and the lack of compassion of some who could easily put someone into thoughts of suicide or homicide.
I truly had thoughts of doing harm to this doc.
Still having some neuro symptoms, especially after overdoing physically, but am sleeping well and have periods when I can think better.
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
Loribelle, twas a pleasure to read of ONE decent neurologist! I wonder if there are any more out there. I don't know if they realize how much we are losing respect for the medical establishment because they are selling out to money instead of being honest about our health needs.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
The neurologist that I saw indicated the demylination, sporadic from the lyme in my legs wasnt serious. A good indicator that lyume didnt attack the central nervous system. This was post lyme diagnosis. Duh!!!
A neurologist that I saw after a car accident in 1993, pre lyme diagnosis indicated my back problems that were reoccuring was from my lifting and work and put cortisone into my back. I wonder if this accelerated my lyme into late stage since I only had it as best as I can tell ayear at that point.
I am not the best one to ask this question, since my response all neuros are goofy.
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
Actually, Loribelle, I am thinking your neurologist made a mistake. He should have told you that you had lyme and made the referral himself and sent a copy of the report to the GP.
Why wouldn't he tell you?
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10179 | From Illinois | Registered: Aug 2004
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I've been having night seizures and the neuro said, "it's probably a tumor" before tests were even done!
I asked if there was a remote possibility that it could be a bacterial infection (my daughter has neuro problems with lyme co's), he laughed and said, "absolutely not".
Guess what all my labs were "normal". When I asked for a copy, I noticed the MRI tech noted some microvascular problems...I'm getting a second opinion from my daughter's LLMD. His request!
LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Mine told me I manifested symptoms from reading about Lyme. Even though I didn't know anything about it before I tested positive. I didn't even know my Dr was testing me for it!
Then he called my Dr who diagnosed with with it and yelled at her. He idd this in front of my Mom, my sister, and me.
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