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Horrible experience with Neurologist

Hello there.  

This is a long rant (separated in two posts here) and I appreciate anyone willing to muddle through it.  It may not be perfectly clear because I have a problem keeping track of what I'm writing now (had to drop from grad school because of that).  So, please be kind.  Sorry if you have to struggle to make sense of this.

First off, a little about me.  I used to be one of the most active persons in my small community.  I was always out hiking, jogging working out or what ever.  On my lunch hour, I would regularly walk 1.5 miles up the steepest hill in town and the 1.5 miles back.  I did this at least 3-4 times a week along with running 2 miles a night 6 days a week (hey I was staying in shape while I tried to attain a job as a cop).

In April 2009, I was involved in a propane explosion.  Since that incident, I have had irregular blood pressure, breathing problems, visual problems and ringing in the ears.

Oct 2010, I was 42 days into the P90X program, I experienced a neurological episode that I and doctors thought was a stroke.  I was hospitalized for 8 days after this event and had to go through 6 weeks of physical therapy to get off my cane (which I still use sometimes) and did some speech therapy and digital manipulation exercises at home.  Anyway, my original symptoms were:
-Left side weakness and numbness mainly in the leg arm and facial areas (the grip strength in my left hand went from 150 pounds to 75)
-Visual disturbances ranging from double vision to color changes
-Slurred speech
-Extreme vertigo
-Extreme fatigue
-Slight head pain
The neurologist I saw in the hospital said he didn't think it was a stroke because the test proved negative.  They ran CT, 3mm no contrast MRI (both studies concentrated on looking for strokes), blood work and EKG (never understood that one really).  He thought it was possibly a TIA and that I should follow up with a Neurologist especially if the symptoms continued.  He set me up with an appointment to see him.  However, I live in Northern California and have Medicare and Medi-Cal (recovering from chronic fatigue, fibromyalgia and human herpes virus 6) and the doctor was based in Reno, NV.  Medi-Cal would not pay for me to see him (and I'm not working so I couldn't afford the co-pay).  So, I tracked down another Neuro in Yuba City (120 miles away from home) who I saw once.  It took just over 2 months to get in and see him so it was mid January.  He said he wanted to consider it a stroke and said there were some abnormalities in my MRI.  He wanted me to continue with what I learned in physical therapy and go to the hospital if I had any more episodes immediately.  He then scheduled me another appointment for 2 months (yeah Neuros are busy in Northern California).  I was okay with this.

In February, I had another episode so I went to my local hospital.  The doc there pegged it as a full blown stroke and flew me to Reno (same symptoms as before).  The original Neuro I saw in Oct was not in Reno in Feb so I just saw the ER doc.  After the third day, I asked why they hadn't run any tests on me and why hadn't I seen a neurologist yet.  The ER doc told me that they thought it was just a migraine.  Huh?  He said that my original Neuro's partner wasn't in any hurry to see me because obviously my symptoms cleared up last time since I never went back to Reno to see the docs (Medi-Cal will pay for hospital stays in Reno in emergency situations but will not pay for follow-up doc visits).  I tried to explain and the ER doc wouldn't hear it.  After 5 days of just lying in bed waiting to see a neuro, I checked myself out of the hospital.

Then back home I lucked out and a neurologist was visiting one of the clinics (one directly across the street from my house) for 3 weeks.  So, my GP sent me to see him.  He looked over my reports (never looked directly at any films) he said it wasn't a stroke.  By this time, I was in agreement.  He said it was either MS or hemiplegic migraine without head pain.  He said if the symptoms didn't improve in the next few months, it is not the migraine.  He also ordered an MRA which showed no blockages.

The next month, April, the clinic where my GP is decided to hire that neurologist.  That was great.  I saw him his first day there and explained how my symptoms had not changed and in fact, the numbness and reaction to pain was worse on my left side.  I even developed chronic drooling out of the left side of my mouth and a slight slur to my speech.  He said he didn't hear the slur but I explained I am a trained public speaker and those who know me can hear it.  He gave me the MMPI test and explained he does that with all his patients.  I took it and answered some questions that I knew would get me in trouble.  NOTE: I had gone through the police academy and we spend time on the MMPI in the academy.  I answered honestly the questions about my numbness the new nausea problems, the stool problems that go both extremes and the such.  The results came back and showed a possible either over concern of body function or hypochondria.  He gave me the results and said to show them to the counselor I see.  

I forgot to mention the mood swings from happy to anger to sadness I go through since all this started.  I think they are more related to my problems in dealing with what is going on with me than the cause because they came after the fact.  
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Avatar universal
Anyway, my counselor, who is in the Army Reserve and specializes soldiers coming back from war with traumatic brain injury, said the test is BS when it comes to someone in my situation.  I went back to my neuro and told him what she said. He said okay and ordered an EEG, which I had done and showed normal like the physician at the clinic that did the EEG said it would.  He said for my symptoms I should have had an evoked potential EEG.  The neuro also said something during this visit that bothered me.  He said that I probably have something that is going to be really expensive and difficult to find so let's just call it the hemiplegia.  I said let's just find out what it is.  He went back to the MMPI and said maybe it was right in that I am overly concerned with whats going on with my body and that people in my situation usually have an easier time coping when they "accept our lord Jesus Christ in their hearts and their lord and savior."  That blew me away.  I stammered out that I wasn't christian and leaned more to the Eastern philosophies and left it at that.

Then I went in to see the neuro today and took my wife because I knew there was going to be problems.  I was going to confront him on why he wasn't ordering good tests like contrast MRI with 1.5mm slices and such.  I have a friend who has MS and is convinced I have the exact symptoms she did 20 years ago, and she doesn't want to see me go through the mess she did back then.  My symptoms have been:
-Constant numbness and weakness on left side affecting legs arm and face and even tongue.  This is actually something of a benefit because I can grab hot items from the oven and not feel the burn on my left hand or when I worked up the energy to mow the lawn (a month ago now), I hit my left ankle with the weed eater so much I developed a welt but felt no pain from it.  It felt like it was hitting my shoe so that's what made me look.
-Strange visual sensations like color shift and double vision
-Extreme fatigue
-Depression and anger management problems
-Muscles that will spasm and remain painfully tight for 2-3 days at a time
-If I tilt my head forward, I get an electrical shock sensation that radiates down my spine and out toward my arms
-Three episodes of falling because my legs just decide to stop working
-More broken dishes from them slipping out of my hand while washing them
-Confusion, in ability to concentrate (I've stopped and re-read this post 4 times already to remember where I was)
-In ability to remember easy details like names and phone numbers (I used to be a walking black book)
-Another neurological episode that lasted two weeks, which I didn't seek medical attention because, quite frankly, I'm sick of it all.  But, this episode now included some right side problems also.
-One episode when my right hip decided to just not work.  Putting any weight on it made it seem as if the joint would become dislocated.  I had to crawl around for one day because the cane didn't even help.  It took 4 days for this to pass.
So, I go in with my wife and this list, and a possible list of what I think may be wrong, which includes MS, Lyme Disease, spinal stenosis or even West Nile (he poo-pooed the entire list).  First thing off, the neuro says the EEG was normal.  I told him the physician at the clinic it was done said it would be for my symptoms and that he should have ordered an evoked potential test instead.  He scoffed at that and said "that's nonsense.  I then told him of my latest episode.  He called it a migraine also.  Then I asked him what made him so sure it was a migraine.  His response was that all the tests prove it.  I pointed out the crappy 3mm MRI, and EEG are the ONLY two tests I've had that look at neurological problems.  He tried telling me he order many more tests but couldn't tell me what they were (he lied).  Then he brought up the MMPI again.  My wife jumped in and asked why he wouldn't run more tests.  His response was, "how much money do you expect the government to waste on him?"  He quickly realized what he had said and followed it with, "or what ever insurance he is using.  And, that he refused to do more tests because of the MMPI results."  Now remember my psychologist who specializes in this MMPI for traumatic brain injuries said it was BS.  I was done at this point, but my wife wouldn't stop.  She told him what my psychologist said about that test.  He laughed and asked, "what planet is she from?  Where'd she 'buy' her license?"  I told him she was in the Army Reserves and specialized in treating soldier with traumatic brain injuries.  He didn't touch that subject again.

Then he tried to shift to my blood pressure.  He took it after we had been arguing (and after he said these hateful things), and it was 165/110.  He said my blood pressure was causing the problems and it needs to be treated.  I then pointed to my chart and said, "my BP was 122/68 when I came in.  It's only high now because the way you're arguing with us."  Then my wife threw out there asking if my MMPI showed normal (like my shrink said it is for my position in life right now) how he would treat me.  He avoided the question and said, "that's a pretty big hypothetical there girlie."  She persisted to which he finally relented and said he would continue doing tests, but it was a waste to spend more money on me now.  

He kept on that I just need to accept what's wrong and continue life.  I need to stop being so concerned with what's going on with my body.  He even said, "God is the only one who knows what's wrong with you.  He dealt you this hand and you have to learn to play it."

I got up and was trying to leave.  The doc scampered toward the door because I was red with anger and really wanted to punch him.  I then told him that another thing is my shrink thinks it's possible I am suffering from traumatic brain injury from the propane explosion.  He said, "well, then.  I'm sure she can write you up a detailed report that will tie all this to the propane explosion for court since that's what you're really after."  I pushed past him and left.

Anyway, I just want to know what the heck is going on.  I want my old life back or I want to have some sort of diagnosis so I can concentrate on fixing it (I did everything from changing my diet to take proper medications to treat the possibility of the migraine, which did nothing as I've gotten progressively worse since October 2010.  For instance, I lost 45 percent lung capacity from the propane explosion.  I tried inhalers and what not only to settle on an herbal remedy and vaporizing marijuana (which helps dilate lung passages) and now I am back to the 160 percent lung capacity I had before the explosion.  My lawyer is unhappy about that, but I don't care about the lawsuit.  I care about my health and body.

I called the corporate HQ and have an appointment to file a complaint against him on Monday.  They hired him because I raved about him after I originally saw him in March at the other clinic.  So, I'm hoping I was the reason they hired him and I'll be the reason they fire him.
Avatar universal
(Wow.  Continuation into post 3)

Unfortunately, I can't recall his first name for the life of me.  His last name is Collins.  He's an old doc (in his 70's) who only works 3 weeks a month.  He used to practice in Southern California, but I was never able to find any ratings or anything on him.  It's like he was a ghost who just appeared out of no where.  

Anyway, I am in the market for a good neurologist.  I have a hormone doc (I'm lo-T) I see in Yuba City named Jahangir Mahmoudi who is also a neuro.  However, I would really like to see someone who specializes in the hard cases and who is maybe in the Chico or Redding areas as they are much closer.  If anyone has any suggestions, that'd be great.  In the meantime, I'm going to collect all my records and copies of the films and take them to see Mahmoudi when I see him in a couple of weeks.

Again, thanks for reading.  I look forward to comments and questions.  Any help is greatly appreciated.

Avatar universal
Forgot one another thing.  When I mentioned the possibility of false negatives for MRI's and MS and blood work and Lyme Disease, he laughed and said it never happens and that I needed to stop listening to people who claim to have lived through such experiences.
1088527 tn?1425316975
wow you been thru so much and that doctor if that what you would call him is a jerk none the less how did the propane tank explode? you need to find a good neuro perhaps one of the big hospitals their maybe able to help you . I would report that doctor to the board as soon as possible sounds like he needs to be retired . maybe the doctor you are going to see might be able to shed some light on things for you or point you in a direction to go . MS is sometimes a difficult diagnosis to make its a doagnosis of exclusion and sometimes can take years to achieve I have been in limboland for 6 years now. please keep us updated on your progress or if you need to vent or just need someone to listen
take care
352007 tn?1372861481
Welcome to the forums and I hope you will stay here and get to know everyone and let us know of your progress in search of a competent medical professional.

You have been through the ringer.  Many of us can relate to your frustrations, anger and disappointments time and time again.

Disclaimer: I am not a doctor.

First of all the blood pressure you mentioned during your doctors visit of 165/110 grabbed my attention.  I realize you walked in there with a 122/68.  Yes, emotions, pain and anxiety can increase the systolic number (the top number or first number) -- the bottom number (diastolic) when it is over 90 mm/hg is considered pathological and is not considered caused by your "anger" you felt at that particular time.  This needs to be investigated as to why it fluctuates from normal to abnormal.  Cardiology could help you with that as well, even if you had never had cardiovascular disease.  Did they do blood tests in regard to your lipid panel (Triglycerides, LDL etc?).  If so, do you know the results?  Do you have a family (mother or father) history of Cardiovascular disease?

Your symptoms are of a neurological nature and they ruled out TIA or Stroke for the cause of your left sided weakness and other symptoms.  Now there has to be another cause for this ongoing issue with you.  Again and unfortunately, you're going to have to find a decent Neurologist.  How are you going to do so? Perhaps your insurance company can mail a Provider Directory phone book to you and you can go through it to find a new Neurologist or you can call them (their number should be on the back of the insurance card) and ask them what Neurologist accepts your insurance in your area.  Unless you've been through this before and hit a brick wall, I'd go that route.

I have sincere empathy in your experiences with the latest doctor.  I would find out through old medical bills or calling your insurance company to find out his name to proceed with your complaint.

Unfortunately, this is a common thing that some of us go through and we move forward and onto the better solution.  Why? Because we know something is wrong with our bodies and need a detailed explanation of why we are going through what we are going through.  Not, "It's all in your head" or "You're obsessed with your bodily functions".  Of course we are concerned when our body's are failing us.  You're not different than the average Joe here.  You wouldn't be addressing the issues if they didn't arise and therefore living your life as you had been if this wasn't going on.  But it is.

There are plenty here that have gone through multiple doctors (Primary Physicians and Neurologists) before they landed with someone who is actually paying attention to them and are competent in carrying out the standard of care you deserve.

I know I didn't give you much consolation to your grief and frustrations or answers that you need but I would start there.

Stay in touch.

1493284 tn?1294879312
Wow-- my blood pressure went up just reading all of that-- I'm so incredibly angry on your behalf...

Is your friend with MS in the area? Does she see an MS specialist?

Hang in there. Keep advocating for yourself.

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