Boo to Neuros

[Joiedecour]

So I got an appt. the dots I queried were artefacts. One of previous 4 sub cortical dots has 'resolved.'  Apparently not MS, but no idea what. 30 minute appt, mini, mini neuro exam testing ankle and knee reflexes sitting on chair with one shoe off and one on.
Advice to newbies in limbo: do not go to a neuro unless your arm or leg is physically detached from your brain. Waste of time.

[aspen2]

This is excellent.  Thank you.

[Joiedecour]

Neuros can't screw in a lightbulb because it contains metal and so how can they get started without an MRI?!

[HVAC]

Give it some time and try another Neurologist. Many of us had to go through a few bad ones until we found one who fit. I had my first Neurological attack in 1965 and they knew my brain stem was damaged. I was sent to the Mayo. I saw Neurologist my whole growing up. They decided it must be mental and i ended up in state hospitals and as a teenager. I knew I was not crazy. Finally in 2007 my PCP was doing my yearly exam and ended up doing a Neuro exam. I then saw a half a dozen Neurologists for two more years. All the MRI, Veps, etc showed MS and other blood tests were negative for anything else. I was about to give up when I was diagnosed with MS.

It took me over 4 years of bleeding, throwing up, losing weight, and diaphragm spasms to be diagnosed with Cancer. I was in a GYN clinical trail getting tested for Cancer all the time and it was missed. The Cancer was very advanced by the time they finally found it. The PCP and GYN feel terrible they missed it.

In both cases I should have pushed harder but I really did not want either disease so I did not push hard enough.

Then my first Cancer doctor was a complete jerk. He is the lead in a rock group for Ovarian Cancer. He was off touring with his band and was letting me die. He never even came to see me after my surgery in the hospital and I was there a week. I call him cut and run. He cuts but does not like the chemo part so he does not see his patients. My second Oncologist does not like patients to have their own minds. I finally got in a study with a good Oncologist.

I had one neurologist who laughed when he told me I had some condition that would kill me. I had one who would not look at my MRIs or records and stated I did not have MS even the the vep she sent me for said I did. The third was retiring and had no bed side manner. Now I have a good Neurologist I can talk to.

I wish all doctors were like my breast doctor who emails me love so and so. Or my PCP or General surgeon.

Trust yourself you know something is wrong. Keep trying until you find a doctor who will validate you.

Alex

[immisceo]

If they're good, just one. It may take a lot longer than you'd like because they're trying their darndest to figure out if they have the right wattage, the right shape, the right mount, making sure the wiring for the fixture is appropriate so they don't short out the whole house. Since they're having to do all this in the dark, it may take a while, but that one good neuro will get there.

[PastorDan]

Does anyone have a good answer for: "How many neurologists does it take to change a light bulb?"

[Joiedecour]

Just a sincere thank you to all for responses. I've been pretty depressed since appointment. I have decided to believe the specialist until there is incontrovertible evidence to the contrary and in the meantime go on living as if all were well. I wish you all well. Aspentoo, you made me laugh so much with your story. I hope things go better for you than they have for me. Take care.

[april_lynne]

I don't know much about MS or neurology, but as a pediatric nurse working in primary care, I do know that physicians as a general rule will defend and cover each other.

This is not because they don't disagree with each other or don't value patient care and results. It's because sometimes it's incredibly hard for a doctor to make a diagnosis, and what might seem crystal clear on your second visit may have been a little less so on your first.
Also, I think they all worry they might have missed it had it been them who saw you that first time, so it's hard to criticize another MD without being 100% confident they themselves are infallible (which, of course, they're not).

For example, on a much smaller scale, we might see a patient with an ear infection that wasn't picked up by another MD, or someone who went to urgent care and received a misdiagnosis or incorrect treatment (i.e., meds).

Do our doctors recognize another MD might have made a mistake or been less clinically skilled? Yes. Are they going to go on a rant to the patient or parent about how bad the other doctor is? No. Because it's not helpful.

Except in the case of obviously flawed or dangerous practicing of medicine, such as malpractice, it's hard for a doctor to point to a colleague- someone who endured the same decade of school, internships, residency, and proving themselves as an independent practitioner- and judge them harshly.

Sorry you're not having any luck though. I do hope you find a neurologist who can help. (Above message aside, there are great doctors, and terrible ones, so as others have said, just keep trying until you find the right fit.)

[HVAC]

In our neck of the woods the MS Specialists all know each other. When I went to Neurologist 3 I said nothing about 1& 2. I just gave him the notes from 1 & 2. Looking at the notes he said who are these doctors and something about them about unethical conduct. He was not impressed. Keep trying. My Cancer doctor was the mentor to the Cancer who almost killed me. The second one saved my life by putting me in the hospital and giving me fluids and two things of blood. Then he told me the other doctor was great and I was wrong. I realized he had to defend his friend. It is unfortunate but Doctors are human.

Alex

[aspen2]

"Advice to newbies in limbo: do not go to a neuro unless your arm or leg is physically detached from your brain. Waste of time."

Thanks for the (jaded) smile :).

I saw a neuro this week about fasciculations I've had since August.  You might appreciate this.

Neuro: "You don't have to worry about ALS; you don't have that."
Moi:  "Oh, I know, I'm not worried at all.  It's probably anxiety or something benign."
Neuro: (gives me funny look) "Well, you  know I have patients with ALS in my practice who presented inititally just as you are today."

Ummmm ... seriously?  Why would he SAY that???

Anyway, I understand.  Oh yes, he also said, "I agree with (ms neuro) that you do not likely have ms.  The changes on the mri are likely of no concern."

Moi:  "What changes?  I saw the mri report and it said no change."
Neuro:  "Oh .. well ... uhh ... yes, well, there were changes but they are probably inconsequential."

Thanks for the reassurance, bud :P.  Oh yes, and when you check reflexes, you shouldn't be looking out the window ...

I'm sorry you are navigating the muddy waters as well.

[karryon55]

I'm sorry you ended up having a bad experience again. Give yourself some time & then get back on that horse again. My first Neuro was not the best & I was ready to never see one again. However it's not possible to ignore some of the symptoms that are driving you to distraction so inevitably you will see another Neuro.

My second time I researched & asked others opinions on who I should see. This has worked out really well for me because I have found the kindest, most understanding & thorough Neuro now. I know it feels like every Neuro is bad to you right now but you will find one that you gel with. Just don't give up.

Hugs......Karry.

[Joiedecour]

Thanks, Alex  : ) wish I could borrow some of your great, positive attitude. This is my 2nd neuro, but turns out first worked originally in same place as second, and second respects first, so much so that first words out of his mouth were the opinions and conclusions of first, even attributed by him to first. Stupid me, huh?

[HVAC]

I am sorry you had a bad experience. I had to go through a half a dozen Neurologists until I found one I could work with. It is frustrating when you know something is wrong and you cannot get a diagnosis. You know your body keep pushing until you have an answer. That is really all any of us can do.


Alex