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1260255 tn?1288654564

Wild Goose Chase...Still Haven't Caught Anything

Hope this finds people feeling as well as can be.

Today I saw a neurosurgeon, at the recommendation of my neuro, who thinks my neuro sx are due to degenerative disc disease and completely unrelated to the numerous brain lesions.

When he first came in the room, he asked me if I was in the medical profession! Guess that had to do with how organized I was and my use of medical terms and questions with the intake person.

As I thought, doc today says that my DDD is mild to moderate and does not explain my sx. I told him that is what I expected him to say. The area of C spine degeneration does not correlate to the numbness/tingling in my right hand and so he applied pressure along certain points in my arm to detect any ulnar nerve damage. No changes with his exam, so it does not appear to be the ulnar nerve.

He did a less than thorough neuro exam, basically pin pricks on my hands,  arm and knee reflexes, and the touch my finger your nose routine. I usually have a brisk reflex reaction with the knees, but today I had none. Didn't even budge. Will be curious when I get the transcript. He did order a blood test for my thyroid, since I am underweight and probably due to the lack of deep tendon reflex reaction...but this is the first time that has happened! Is it common in MS or other demyelinating diseases for reflex reactions to go from hyperreflexive to none?

Part of humoring my neuro with this visit was to get a referral from this doc to another neuro, upon the recommendation of my PCP. Doc today said he was trying to think of the best person for referral; said he did not think MS/demyelinating specialist was best place to start. Wants me to see someone in his own practice.

Will have to do some research and thinking first, then make a decision. Welcome any thoughts.

My neuro did order more blood tests, telling me she was re-running tests, because results can change in time. First basic results came back yesterday, with the list of pending tests. Saw they are different tests than what were run before. Good on one hand (now trying to rule out other mimics, i.e., Sjorgens), but also puts me on the fence in terms of trust.

Don't know my feelings yet about today's visit, other than "I told you so" about the back. Really did not make sense, but still have that basic underlying respect for doctors which probably needs to change.

Wish this was like the old days as a kid when you went to the doc with a strep throat and they could dx it right away and get you moving along.

Just counted my marbles and they still seem to be all there.

Audrey
11 Responses
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1453990 tn?1329231426
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
Helpful - 0
338416 tn?1420045702
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¢!
Helpful - 0
1260255 tn?1288654564
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



Helpful - 0
338416 tn?1420045702
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.
Helpful - 0
1453990 tn?1329231426
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
Helpful - 0
1260255 tn?1288654564
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

Helpful - 0
1260255 tn?1288654564
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
Helpful - 0
198419 tn?1360242356
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
Helpful - 0
Avatar universal
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?

Helpful - 0
1260255 tn?1288654564
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
Helpful - 0
1312898 tn?1314568133
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.
Helpful - 0
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