Keep chasing the goose. At least you seem to have ruled out a physical issue for the pain. Your Neuro is running out of places to hide
Bob
I have no reflex in the right knee - it's the lesions in my spine. This elicited no comment at all from the neuro, even though I thought it was odd. I had to look it up myself to find out what it meant - basically there's no connection from the knee to the spine to the brain. Typically when the knee is stimulated, the electrical signal shoots up the spine to the brain, and back down to the knee, telling it to kick out. If there's a brisk signal, it's a damaged nerve. If there's no signal, something's broken.
I'm not sure if I trust this guy to find another neuro for you. I would talk to your PCP about another referral, and talk to your neuro about getting copies of your records. Although with his attitude and lack of consistency, his notes will dam you to limboland... just my 2¢!
Couple of things I forgot to mention re: visit today. I was definitely having problems with tremors both in the hands and legs. Doc did pick up on this in exam. Intake person had seen my hands shaking prior to doc coming.
With all due respect, he is correct in ordering tests of the thyroid. It is a simple test and could explain certain things. Hyperthyroidism can swing to hypothyroidism if not treated. Might explain difference in reflex responses, but why so quickly without other changes?
Just do not understand how docs dismiss the brain lesions.
Here's the profile of his fellow practitioner that he has in mind for me:
Associate Professor of Neurosurgery, of Medicine (Medical Oncology) and of Neurology Neurosurgery : Neuro-Oncology
Patient Care Organizations
Neurosurgery, Brain Tumor Center, Lymphoma, Leukemia and Myeloma Program, Neuro-Oncology, Stroke Center, Yale-New Haven, Neurology, Cancer Center, Yale, Brain Tumors and Neuro-Oncology
Clinical Interests
Chemotherapy of primary brain tumors (high-grade gliomas, central nervous system lymphoma); neurological complications of brain cancer; general neurology; molecular markers of cancer.
Accepts New Patients? Yes
Patient Type: Adult
Accepts appointments from patients or physicians
Board Certifications
• Neurology, Board Certified, 2001
Education & Training
• M.D., Johannes-Gutenberg-University of Mainz, 1994
• Fellow, Massachusetts General Hospital, Boston, MA, 2002
• Resident, Hahnemann University Hospital Philadelphia, PA, 2000
• Intern, Medical College of Pennsylvania/Philadelphia, PA, 1997
• Fellow, University Hospital Heidelberg / Germany, 1996
My PCP is at a loss in terms of someone specific for referral. The one name she did have at Yale is no longer practicing there. Anyone from CT with someone good, HELP!!! You can always PM me.
Ain't life grand? It just keeps getting better and better!
Audrey
Don't be afraid to do your own online research, too. I found a couple of great neurologists in the D/FW area. (Currently trying to get set up with the guys over at UTSW.)
This guy doesn't look too bad, but it looks like his focus is cancer. It sounds like your neuro is thinking stroke or tumor, which is a possibility, but not any less likely than MS. The good news is that he looks pretty young.
Christopher H Gottschalk, MD at Yale Neurology or
David Hafler, MD, MSc t Yale Neurology
They are both involved in the Yale MS Center and the Department on Neuro-Immunology.
Hafler has written quite a bit about T-Cell suppression in immunology. I;m not sure you could get near any of these Dr.s, but at least get to their service and get seem by one of the sharper residents or fellows. At least they might have to review your case in clinical rounds.
Bob
Gottschalk is no longer with Yale. He's on his own now and I have to see what's up with him. He's the guy my PCP wanted me to see and I looked into him 2 weeks ago. He is still practicing, but no longer associated with Yale.
Am I repeating myself???
Audrey
I'm going to correct myself here. Gottschalk is no longer with Yale New Haven Hospital, but still is with Yale Medical Group.
Cannot access my health insurance website, so don't know if he is in their network. I seem to recall that he is not.
Audrey
Hey Audrey,
Once you identify who you want to see for a 2nd opinion (you don't need this docs blessing) you don't have to count on them being on the list of network docs.
Can the office directly and ask them if they take your insurance.
When my insurance was referral based that's what I did. And, my 2nd opinion was out of state at Johns Hopkins. Once I found out they took my insurance I simply gave my referring MD office all the corresponding info, doc name, etc. to write it up and then lined up the appointment myself from there.
I look forward to you posting the write-up on this appointment. Definitely something worth bringing to the 2nd look doc.
-shell
What are the other symptoms that make this neuro say it is not likely MS and want to refer you to a medical oncologist/ nuerologist?
My neuro says that my lesions are not typical of MS. She claimed they were too small, not the right shape and not in the right locations. When I asked her what else could cause juxtacortical lesions and lesions in the corpus callosum and periventricular matter, she told me location does not matter.
That is why my PCP recommended I seek a second opinion.
It was the neurosurgeon who wants to refer me to someone in his practice whose specialty seems to be general neurology and neurological oncology. He said that it would be a better place to start than a specialist in demyelinating disease. I did not ask why and wish that I had.
Tests to date include incomplete neuro exams, MRI's, LP and blood tests and a field vision test.
Audrey
Hi Audrey, I'm so sorry that this process continues to be so confusing. I don't understand why docs like the lesions to be a certain shape/size and or region. It sounds like she backtracked with that when talking about other possibilities though.
You are being referred to possibly a neuro oncologist? That has to be really scary.
It's such a tough time, waiting for diagnosis!!
As far as thyroid, I think that is just another rule out that they have to do like vitamin b12, D etc. I have taken thyroid for over a decade, doesn't make any difference with the neuro stuff.
I'm glad that you brought up the absent knee reflexes. I have the same problem, hyperreflexia in my left and none in the right. So far all I have heard from doctors is "huh, that's weird". And it has never made it to the neuro report. Your explanation about spinal cord lesions makes sense.
Well, I do hope you find answers soon and have a full neuro exam.