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Neurologist Gave up
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lepman posted:
What do you do if your Neurologist gives up on you and tells you, " we don't know what's wrong with you, everything shows up normal. He admits there is a problem, Then tells us," It's not Neurological, it's not Vestibular and it's not Physiological. you must be willing this to happen." He then performes a exam and tells you he's going to discuss my case with the head of Neurology and leaves the room. After about ten minutes the door opens and enters the head of Neurology and a patient advocate and announces,

" You are not going to be treated any further by our Neurology department and you need to leave this hospital at once."
to our surprise, My wife and I, we were greeted and escorted out of the hospital by two armed police men. mind you, I walk with a cane and have very poor balance, and the pace I have, even a turtle could pass me.We were told, by the police men that the doctor who saw us, told the head of Neurology that we had threatened him and swore at him and called him names and that he feared for his life.

Why would a Doctor lie like that and do that to a patient I will never know. My wife was present at all times during our visit, she did and would attest to the fact that none of these things ever happened and even the Police men felt embarrassed about escorting us out of the hospital. I think that if a doctor just can't find the problem, then he or she and should just tell you they can't and refer you to someone else. The police men and my wife and myself felt that this action was way out of line and uncalled for.

As for the, willing this to happen thing, I just wonder about his mental state of mind in saying that. And what ever happened to a patients rights? I guess at this hospital a patient doesn't have any. Going on three years now with no diagnosis or treatment, and my faith in doctors is rapidly fading.
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readyfordx responded:
Find you a neurologists who specializes in MS. Even if it is not MS I pray he will care enough to find what it is. You can go on the computer and do a search to find a neuro who specializes and I hope you find the one you need. I had to go through two and the third one is what I needed, the other two made me feel like it was all in my head and come to find out the last MRI that I had done showed several lesions but because I am 59 year old, I was told that I was too old to have MS (not allowing for the fact that I have had symptoms for ten years, they just came and went but now they don't. Good luck to you and just don't give up on yourself because if you don't pursue your own health, no one else will.
 
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kwd1017 responded:
see specialst! Been told by several neuro.s, natural paths, chiropracters that it must be something else. Was begining to wonder if maybe I was crazy. (crazy people don't know they are crazy, so figured it could be possible I didnt realise i was) I saw a good MS Specialist and he was able to confirm the MS. All docs are not created equal. Sorry for your recent experience
 
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Always14989 responded:
That is so awful I can hardly put it into words. As someone that was mis-diagnosed for 30 years I can imagine your pain, both physical and emotional!

Please accept our hugs and best wishes. There is a doctor out there somewhere that will help you. Finding him or her is the hardest part.

Don't give up! I know, easy to say!

Good luck.

Al(ways sorry to hear of doctors with such terrible attitudes...)
 
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lepman replied to readyfordx's response:
Thank you for your response, and heart felt concern. I no longer have the option or resources to get a new Neurologist. Believe me I have searched high and low for a new doc,but in my current situation, insurance and money wise, it's not going to happen. I will most likely be one of the many, who falls through the cracks in the medical system. And gets to bear their scares from many years without Diagnosis and treatment.
 
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readyfordx replied to lepman's response:
I really hate to hear that. Could you maybe get a case worker with your insurance company who could help you or maybe even apply for disability. I just know that there has to be someone who cares and who can help you. Maybe you could go through the MS society, I work in the medical field and I will do some research too. I can't stand the thoughts of anyone with the pain and symptoms like mine not being able to get help. You just have to get you the right doctor. I will try to find out where you can go for help and let you know. In the meantime, God keep you in his arms until he sends someone to help you.
 
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lepman replied to readyfordx's response:
I no longer have Insurance, and have tried to file for disability, because there is no definitive diagnosis from a doctor, I don't qualify. I have wrote to the Mayo clinic and was refused even an appointment to be seen, they said that because of the volume of people is so great and my symptoms don't meet their criteria to even warrant an appointment.

I have tried to be seen at the V.A. hospital but that went no where, I have gotten a hold of my Senator's office, to see if I have any alternatives left, So far no answers. I have tried the V.A. Commission as well, and no answers from them as well. I have, how ever, gone to an E.N.T. appointment and found out that I went from a 61% loss of inner ear function in my right ear ( for balance) to a now 100% loss of function. But have excellent hearing in both ears.Just no balance.

I know the body needs both to function right, but is this going to start happening to my left ear now? Will I ever be able to get the function back in my right ear? If my left goes totally out will I be able to walk or will I be wheel chair bound? And because the inner ear function ties in with the visual cortex and brain stem, will all my other symptoms get even worse? Way too many questions, and no answers for them. I just know that this is getting worse,Not better. The tests keep showing this as well, and I know they can't say that it's all in my head,when tests prove other wise.

The E.N.T doc's say that something is causing it and the Neurology doc needs to find out what that may be.But like I tell them, I have no Neurology doc now, and no insurance to get one. The E.N.T. doc's say that I may be able to get medicare, but I have checked on that as well and I don't qualify for that either. Kind of discouraging isn't it, but way more frustrating.
 
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coloradoscene replied to lepman's response:
Your situation does sound very frustrating, and I don't believe I have any recommendations on fixing your insurance problem, but I do have a comment about your balance issue. If you can ever get in with a doctor, even the E.N.T., have them check into the possibility of Miniere's disease. Over the past few years my father was experiencing symptoms similar to yours, and was finally diagnosed with Minear's disease and ended up having surgery. Every situation is different, but I thought that might be something for you to consider.

Wishing you the best of luck!
 
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lepman replied to coloradoscene's response:
Meniere's was checked for and ruled out. The E.N.T. doc's suspected that at first, and checked for it repeatedly.They also told me that it doesn't explain all the other symptoms as well. Burning and pins and needles and numbness sensation in my legs,difficulty swallowing,blurry vision, cognitive thinking and problem solving issues,Sever balance and coordination issues,and a few others that just doesn't fit a vestibular issue such as Meniere's.

But like they said to me, " You went from a 61% loss of inner ear function to a 100% loss of inner ear function , something is definitely causing this to happen." they also told me that this condition is a Neurological condition.
 
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juleslady responded:
I have been through the MS shuffle for 10 years, although I believe my first case of neuritis was 20 years ago, and I was finally diagnosed in Jan this year. My primary physician told me 8yrs ago I just had a posture problem, the next specialists carpal tunnel, trapped nerve, tos, a migraine, etc etc. The doctors just want to schedule "further tests" I have had 6 ekg and 8 mri's and I think it not so coincidental I was finally diagnosed after losing my job and my hmo. If you have no health insurance and are able I strongly advise trying to get to LSU. It is a free hospital and an appointment can take over 6 months to get, but the doctor asked me straight away if anyone had ever mentioned MS and I truthfully said no. The next month I had a Lumbar puncture which confirmed MS and was put in hospital for a course of steroids for my neuritis and I am now receiving free interferon. Ask for Dr. Dru.
 
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juleslady replied to lepman's response:
There is a balance testing game on the Wii which tells me I have the balance of someone 30yrs older. I have never had my ears tested but my husband tells me I am selectively deaf, the rest of your symptoms are familiar to me.
 
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readyfordx replied to juleslady's response:
This is all so sad, that we have to go through so much just to be diagnosed..I have waited for at least 6 years to be diagnosed, I finally went on the internet and diagnosed myself and I finally think I have a neuro that agrees with me and is willing to help me but I have to take a blood thinner for two more months because I tested positive to a blood factor 5 disorder and he wants to make sure it is not the clotting factor causing my lesions on my brain. I know and i think he does too that it is MS but I also understand and appreciate him wanting to make sure it is not the blood disorder. I am 59 yers old and he justs want to rule everything else out but I am tired of hurting and am ready to move on and feel better.

I wish you the best and I pray you will find you someone who will hlep you. God bless.
 
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juleslady replied to readyfordx's response:
ask to have a lumbar puncture with xray, they xray your back while taking spinal fluid to ensure the needle does not hit a nerve, it takes 20 mins and is the only way to diagnose ms


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