Frustrated & thoroughly confused with my neurologist

[KnJsmommy]

I went to my neurologist for the 1st time on Apr 7. He didn't spend much time with me... Basically introduced himself, had me walk while he watched, checked reflexes & strength, and did a brief, handheld buzzer thing to my arms & legs. He then asked me if any of my Dr's have ever brought up the subject of MS, and ordered a brain MRI only. At no point did he allow me to tell him what my actual symptoms are.

Fast forward to last week, May 12..., He walks into the room, handing me my MRI report (never explained anything), stated the images were "within normal limits for age", said he's ordering labs, and again walked out. He still hasn't let me tell him the extent of what I'm experiencing, and did not ever do a Lumbar puncture, or MRI of my spine!

At this point, I still have no valid diagnosis, other than his statement that "probable" MS is now "possible" MS. When I looked at the lab orders, he listed the correct ICD-9 & ICD-10 codes beside MS on the list of "patient problems", along with the correct coding for my already diagnosed issues. Does this mean he has made his diagnosis & not bothered to inform me?? What does this mean?

[lyndacarol]

I went to my neurologist for the 1st time on Apr 7. He didn't spend much time with me... Basically introduced himself, had me walk while he watched, checked reflexes & strength, and did a brief, handheld buzzer thing to my arms & legs. He then asked me if any of my Dr's have ever brought up the subject of MS, and ordered a brain MRI only. At no point did he allow me to tell him what my actual symptoms are.

Fast forward to last week, May 12..., He walks into the room, handing me my MRI report (never explained anything), stated the images were "within normal limits for age", said he's ordering labs, and again walked out. He still hasn't let me tell him the extent of what I'm experiencing, and did not ever do a Lumbar puncture, or MRI of my spine!

At this point, I still have no valid diagnosis, other than his statement that "probable" MS is now "possible" MS. When I looked at the lab orders, he listed the correct ICD-9 & ICD-10 codes beside MS on the list of "patient problems", along with the correct coding for my already diagnosed issues. Does this mean he has made his diagnosis & not bothered to inform me?? What does this mean?

I suggest that you try to recall the unexplained symptoms you have had. Compose a written list of your symptoms (I pulled these below from your earlier posts here at TIMS) – send the list to your neuro along with a short letter explaining that you want to be sure there is a record of your symptoms in your file in his office:

Extreme fatigue
Bladder incontinence
Muscle spasms
Dizziness
Pain & pressure behind left eye
Severe headaches
Tinnitus (a.k.a. ringing in the ears)
Weakness/knees buckle
Tingling/pain in right arm/numbness in fingers (a.k.a. peripheral neuropathy
Hypertension
Hydronephrosis
Acute sinusitis infection
Anxiety
Depression
Loss of balance
Severe reflux
Diarrhea
Nausea
Vomiting

Vitamin D deficiency may be involved in your neurological symptoms. If this possibility has not been tested and ruled out, I hope your neuro included a vitamin D test in the lab work he ordered now (consider calling his office and confirm that you want a vitamin D test to be included); this test (the "25-hydroxy D" test) is not part of routine testing – it must be specifically ordered. Be sure to request your own copy of any test results; it is important to have the actual numbers.

[KnJsmommy]

I have been keeping a journal of all my symptoms, and the dates they occur. I had this with me at both visits, but he doesn't stay in the room long enough for me to really talk to him. I'm sure this is not normal behavior for a professional that is supposed to care about their patient's well being on an individual basis!

My next appointment isn't until July 19, but I am seriously considering getting a referral from my GP, to go to another neurologist.

[ElliotB]

Is this neuro one that specializes in MS?

Keep in mind that there are about 400 illnesses that mimic the symptoms of MS - MS is often hard to diagnose and often can take a long time to diagnose. Here is the basic criteria used for a MS diagnosis:

http://www.nationalmssociety.org/Nation ... -of-MS.pdf

[lyndacarol]

I have been keeping a journal of all my symptoms, and the dates they occur. I had this with me at both visits, but he doesn't stay in the room long enough for me to really talk to him. I'm sure this is not normal behavior for a professional that is supposed to care about their patient's well being on an individual basis!

My next appointment isn't until July 19, but I am seriously considering getting a referral from my GP, to go to another neurologist.

You are wise to keep a journal of your symptoms and the dates they occur.

In my opinion, it is important to get your symptom information physically into your file. (My sister-in-law needed proof for a medical lawsuit; such a document would have helped her.) If you do not send a copy of your symptom list to the doctor before your July 19 appointment, consider taking a copy to give him AT the time of your appointment.

I agree with your assessment of his behavior – it is NOT very professional for someone in the business of healthcare.

[Scott1]

Hi,

Do not ever think you have to do as your told. Change neurologists, change doctors or change both. You need to find a loop of medical professionals who do a better job. The good ones stick together and so do the bad ones.

Regards,

[KnJsmommy]

Thank you all for your input, it is greatly appreciated. I am at my GP's office now, and asking for a referral to a new neuro. I don't like feeling like an income source & a basic number, lol, I want to be treated as an individual with a physician that actually cares!

[KnJsmommy]

My GP understood how I feel about the un professionalism of the neuro I'm currently going to, and said for me to find a new one that takes my insurance, let him know & he will gladly give me a referral. He also stated that the ICD diagnostic codes DO in fact mean that he has made a diagnosis, and is as baffled as I am, about the neuro not informing me of such. According to all the lab paper work, I DO in fact have MS, vertigo & optic neuritis.

My GP is also aggravated with this neuro himself, because they still have not sent him any of the notes he requested over a month ago! Plus, half of the labs the neuro ordered are tests he himself already ran & forwarded the results of, which means the neuro is obviously just milking my insurance, and could care less about my personal well being!

[ElliotB]

While I don't necessarily disagree with your thoughts on this neurologist, he was actually doing a good job strangely enough. He had quickly come up with a possible diagnoses, and then adjusted his diagnosis based on the testing he had completed.

By the way, it is not unusual for a doctor to order his own lab work rather than to rely on lab work done elsewhere. I recently had routine lab work done by my doctor that indicated I had an issue with my kidneys and was referred to a specialist. The specialist did all kinds of tests including new lab work, and fortunately all the additional testing including the new blood work indicated things were OK. So you never know...

I still recommend you see a neurologist who specializes in MS.

FWIW, MS is often hard to diagnose.

[KnJsmommy]

Since this whole MS thing is new to me, I don't know which neurologists around here are MS specialists. My GP did inform me that there are no neurology groups that accept my insurance in my own county, which means I either have to go to someone in Florida, or to the University of South Alabama, in Mobile. Does anyone know who to go to in my area, assuming that maybe one or more of you might live close by....

[KnJsmommy]

***RANT***
So I went back for my follow up appt today, and I think my neurologist just "fired" me as his patient!! He said ALL my labs are normal (can't get actual numbers cuz he refused to give them to me), my BRAIN ONLY MRI was within normal limits for age. He refuses to do a spinal or neck MRI, and lumbar puncture because he doesn't feel it's necessary. He said he will not treat me for something he can't find, and feels my case would be better handled by a pain management dr!! WHAT?!?! How is a pain dr going to treat vertigo, migraines, and everything else going on?? I thought pain management is for people in chronic pain... Not for MS-like neurological symptoms! Isn't MS a condition diagnosed AFTER ruling out everything else in some cases? So shouldn't the quack dr be more determined to find out what is actually causing my issues, and not brushing me off like he is??? Ugh!!! (Sorry, I'm just VERY frustrated & upset right now... RANT OVER)

[lyndacarol]

***RANT***
So I went back for my follow up appt today, and I think my neurologist just "fired" me as his patient!! He said ALL my labs are normal (can't get actual numbers cuz he refused to give them to me), my BRAIN ONLY MRI was within normal limits for age. He refuses to do a spinal or neck MRI, and lumbar puncture because he doesn't feel it's necessary. He said he will not treat me for something he can't find, and feels my case would be better handled by a pain management dr!! WHAT?!?! How is a pain dr going to treat vertigo, migraines, and everything else going on?? I thought pain management is for people in chronic pain... Not for MS-like neurological symptoms! Isn't MS a condition diagnosed AFTER ruling out everything else in some cases? So shouldn't the quack dr be more determined to find out what is actually causing my issues, and not brushing me off like he is??? Ugh!!! (Sorry, I'm just VERY frustrated & upset right now... RANT OVER)

You have EVERY reason to rant and then to find a new specialist! You were right on every point! Life is too short to deal with this clod of a neurologist!

He refused to give you copies of your own lab test results??! Those are YOUR tests – you or your insurance paid for them! (I'm quite sure he didn't do them just out of the goodness of his heart!)

Everyone will have a different reaction – mine is: It's time to be done with him. Ask your GP to order the vitamin D blood test (the "25-hydroxy D" test) AND request your own copy of the test results. I hope you get better cooperation out of him.

If necessary, ask for a referral to an endocrinologist; if you wish, ask for the referral to another neurologist – are you sure that would mean going to Florida or Mobile, Alabama? Perhaps a call to your nearest big hospital or to the University of South Alabama could help you find someone local. If there is a nearby chapter of the National MS Society, perhaps they have a list of names.

[KnJsmommy]

Yes, going to Florida or mobile is my only option, as there is no specialist in my county that accepts my insurance. Universitiy of South Alabama is the closest one. My GP has already given me a referral to go there, so will try to do so.

As far as the Vit D testing, I have requested this 3 separate times from my GP, but he says that because I have yet to go thru "the change" (menopause), it is unnecessary. He still feels that my high blood pressure is the cause of most of my symptoms, even though it is well controlled on the meds I'm taking for it.

Oh, and another thing about my ex-neurologist... He seemed genuinely agitated that my GP had referred me to an orthopedic surgeon based on results of my NCV, and that the surgeon decided I needed carpal tunnel release surgery. He gave me the 3rd degree about the surgery as well, and I did try to tell him about my post-op experience (per orthopedist request), but he wouldn't listen. This is what happen as soon as surgery was over
& the nerve blockers wore off....

My CTS release surgery was a week ago today, and went well. My entire hand stayed numb for over 24 hours, and when I did finally get feeling back, my hand was in extreme pain, and I kept having electric pulses running up my forearm. My surgeon had sent me home with a prescription for 5/325 Percocet, but it wasn't even touching the pain, so I called my surgeon and discussed this with him. At that point, he informed me that after reviewing the clinical notes from my previous surgery on my left hand 3yrs ago, that my pain receptors have abnormal reaction to surgery, and that he feels that my "Probable MS" DX is indeed the reason for this. On that basis alone, he decided that not only would he increase my Percocet, but also add Gabapentin because my my CNS was going haywire after this surgery. I picked up both new prescriptions last Fri, and started taking them immediately. The stronger Percocet still wasn't touching some of the pain, but combined with the Gabapentin my hand is now recovering very well, with minimal pain.

I can also honestly say that my weird skin sensations like water droplets, itching pain, pins & needles, burning, and numb fingers & toes have shown remarkable improvement after starting this med. My ex neuro didn't seem too pleased that someone other than himself had adressed & actually treated my symptoms, which makes me wonder if that's why he opted to "dump" me.

[KnJsmommy]

I might add too that even with the Gabapentin, I still have no feeling in the tips of my index, middle & ring fingers, although I can finally feel my thumb after 5+ years of zero sensation!!

[lyndacarol]

Yes, going to Florida or mobile is my only option, as there is no specialist in my county that accepts my insurance. Universitiy of South Alabama is the closest one. My GP has already given me a referral to go there, so will try to do so.

As far as the Vit D testing, I have requested this 3 separate times from my GP, but he says that because I have yet to go thru "the change" (menopause), it is unnecessary. He still feels that my high blood pressure is the cause of most of my symptoms, even though it is well controlled on the meds I'm taking for it.

Your GP is wrong about the people who need vitamin D testing – EVERYONE should have it tested! A blood test is easy, inexpensive ($50-$70, and usually covered by insurance), and necessary. Over 1/2 the entire world's population is Vit D deficient; I have seen estimates of deficiency in 70% of the US population. If your GP cannot be convinced to order the 25-hydroxy D test, please pursue another possibility:

It is possible to order a 1-time vitamin D test kit from GrassrootsHealth for a $65 fee (+ $5 shipping). This at-home test requires pricking a finger, placing a few drops of blood on the blood spot card, and mailing in (you get results within a week).
https://www.grassrootshealth.net/proj-welcome/?pr=95284

A similar in-home vitamin D test kit is offered by the Vitamin D Council for $50:
https://www.vitamindcouncil.org/testkit/

Recently, I found the Virginia Hopkins Test Kits for $72 (featuring ZRT Laboratory testing): finger stick, collect blood drops on small card, send it in prepaid mailer, results are e-mailed to you
http://www.virginiahopkinstestkits.com/ ... ature.html

The Theranos company has a menu of all kinds of tests (and their inexpensive prices) done with simple drops of blood:
https://www.theranos.com/test-menu?ref=our_solution

Thanks to NHE, who posted this information some months ago, there is the option of ordering your own nutrient tests:

How to Order Your Own Tests for Nutrient Levels
http://www.peoplespharmacy.com/2016/03/ ... nt-levels/

First paragraph: "Do you know your vitamin D status? What about vitamin B12? It can be difficult to discern what your nutrient levels are unless you have the results from a laboratory test."
…
"A. Many states now permit people to order their own laboratory tests to determine nutrient levels as well as thyroid panels and other data. Some of the companies to look for include AnyLabTestNow.com, HealthTestingCenters.com, HealthCheckUSA.com, Life Extension, SpectraCell Laboratories and WellnessFX.com."

Oh, and by the way, high blood pressure has been associated with deficiencies in calcium, magnesium, potassium, and vitamin D. What did your GP find when he tested all these?

Research conducted at Harvard University among nurses found that women with low vitamin D levels (17 ng/m [42 nmol/L]) had a 67 percent increased risk of developing hypertension.

Vitamin D and multiple health outcomes in the Harvard cohorts. (2010)
Wei, Giovannucci
http://www.ncbi.nlm.nih.gov/pubmed/20486209