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
-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.
(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.
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.
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
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.
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.
Did he seriously call your wife "girlie"? Because that's pretty much not okay. It's 2011, not 1956. (not that it should have been okay then, but...)
Between that and telling you about Jesus I'd be trying to find out how to complain to the state medical board. Ugh.
Wow what an ordeal you have been through! My heart goes out to you and your wife. You have been through so much to your body and now your dignity and pride.
I will make the same disclaimer Lisa JF made that we are not doctors nor can we diagnose you over the internet, That being said, I agree with Lisa that your BP needs to be under better control. Have you seen a cardiologist? There are heart conditions that can cause your body to form small clots that can cause TIAs and strokes. A cardiologist can also handle your BP issues.
I have to agree with the person who suggested post tramatic brain injury (TBI). A lot of your symptoms fit many entities including MS, strokes, TBI, and other diseases with neurological symptoms. Your case needs to be handled by an intelligent, non-biased, caring neurologist.
You need to report the doctors who have been demeaning and rely on their personal beliefs all in an effort to tell you what is wrong with you.
I truly wish you luck in the struggle to find a good neuro to sort through these symptooms. Many of us have seen numerous neurologists. Many are what we call "limbolanders' due to the fact that have symptoms that don't fit any one particular disease. In fact, that actually have their own site here on MedHelp.org. Patience is a hard trait to hang onto in times like this but it is necessary.
Please keep us in the loop and let us know how things are going.
Thank you everyone for your kind words. I'm just now getting back to this because I was sick all weekend thanks to being worked up so much on Friday.
Kat, Yes. I am turning him in. I have an appointment with his boss today and will also contact the medical licensing board and even a malpractice lawyer. I'm gonna do the lawyer thing at the behest of my psychologist. He admitted he based his treatment on a faulty MMPI test that he is not certified to properly test and such. She said he is easily practicing medicine beyond his scope along with all the hurtful things he said to both me and my wife.
Lisa, I see my GP tomorrow and will seek a referral to a cardiologist. Heart problems do run in my family, however, I've been vegetarian since 1984 and have no plaque in my system :D However, I do know there are other conditions that can cause this problem well beyond plaque.
Sadie, yes my friend sees a doc in Reno, NV. Since I'm on Medicare and Medi-Cal, I'd have a co-pay and deductible that is hard to meet. I am going to look into her doc in Reno though and try to figure out a way to afford it. I mean can I really not afford to see a good neuro doc?
Zen, Yep. He called her girlie. And, yes, I am going to do my best to force him into retirement.
Ren, thank you too. I have had docs tell me that this is MS, including the neuro doc I wrote about in my post. However, he seemed to have a problem doing more tests. Like I said, he only ordered an EEG since I've started seeing him and he relied on lower resolution MRI's that were looking for stroke not MS. Basically, I wasted about 7 months thinking this doc had my best interest at heart.
Thank you everyone.
Wow - Wow - Wow!
As I was reading your journey here I found soo very many similarities to what happened to me with those symptoms you experienced all at once. Especially the slur, trouble walking, confusion, etc. I too very versed in public speaking, and those in the know - knew something was wrong.
Difference is though I was trying to convince my docs it must be a stroke, and they said it was MS.
I can't imagine being told what you were told. Do you have all the results from the hospital visits, and all the testing?
Thanks for joining us,
Wow... what a ****.
You have all the signs of somebody with MS, and your story is a perfect example of what's wrong with our current health care system. I hope you have all the tests, although from the story you've told, I don't see how they could help. You need to be retested from scratch by somebody that knows what they're doing.