Autoimmune disease mistaken for mental disease

Posted by Lisa @techi, Aug 2, 2017

When l was at the Mayo Clinic my neurologist told me that my neurologist l had assumed instead of read my medical records that l had an Autoimmue disease. My gasterentologist knew because he referred me to a rheumatologist. So l was mad at that because of the symptoms l was having and they wanted to place me in a mental hospital. Then l also found out medicine l am allergic to they still have that l am taking. And one of the hospitals l go to and the my cardiologist l am seeing right now. My insurance is cancelling there contract with them and my insurance is a major insurance. So l called my cardiologist to see if she wanted to see me before the discontinue there services with the hospital and she tells me l wasn't treating you for anything so you can follow-up with general practice doctor. l believe they have been misdiagnosing people and running up insurances that they know will pay them well. So now l guess l have to come forward to my insurance that they were suppose to run a test that they didn't so they can take off my record that l have psychiatric issues instead of autoimmune issues. Sorry excuse of a medical hospital and its doctors. They said with the insurance company not renewing the contract will hurt 600 doctors and l am sure the employees too. Time to search for a new doctor!!!!

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Does anybody know what you can take for a headache when you are allergic to all nsaid, and aspirins. I was to see my doctor today but since l had a headache and was so nauseated l just couldn't. I had an ice pack on my head the night before and today also. I asked him before and he put me on tramadol. I had 3 of them today and no relief. I called the pharmacy and they didn't know of anything. Its so crazy theirs nothing you can take. I had pain like this before when l had my first bout with encephalitis but l could take pain meds and tylenol. I talked to the neurologist at the mayo clinic about my headache and she said she doesn't believe it has to do with autoimmune encephalitis. It daid when you really can't find a good doctor and you don't live near the Mayo clinic and where l live if you dont like the specialist your doctor sends you to you have to go outside of where that specialist is and go to another doctor that has privilages at the hospital but has his own practice. Thats crazy to me or you can go to another hospital. And that's what l did before and he wasn't happy with that because when he sends you to a doctor he get a cut or they refer more patients to each other. The patient really doesn't mean anything its all about money and your insurance pay out to the doctors.Thats why my insurance isn't renewing a contract with one of the hospital here because if they know you have good insurance and they know they are going to pay good they take advantage of the insurance. Sorry system. What happened to giving the patient the best care.

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Back to it is all about the bucks. I sing these words to the tune of, "It Is All About That Bass". Providing my own comic relief about an epidemic that has been going on since the beginning of the human race.

@techi Sorry for your discouragement. Navigating through the medical system can be daunting. It is little wonder people shy a way from trying to get help. You tried and sounds like others were not pleased. The solutions I do not have for this problem. Time to start singing again.

As for headache pain? No recommendations.

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oh yea! YOU HAVE PRESENTED WHAT I HAVE KNOWN FOR MANY YEARS. what has happened to the morality of doctors? i have the opinion that "BIG BUSINESS" has entered into the field of medical practice thus changing the treatment of patients. what a shame for american's to live with.

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Monday had a headache until wednesday. When l went food shopping on wednesday l was so sick l had to rush out the store and sit in the car. My head was hurting l was dizzy and l couldn't focus. I never had this happen before where l had to rush out the store and the last time l couldn't see l fell in home depot. Right now l don't have a neurologist and my primary care doctor is clueless. And in order to get the neurologist l want he has to give me a referral and l really don't know why. My insurance doesn't require it but you know everyone has to get there cut. Also if another neurologist in their group misdiagnosed you they don't want to be envolved. But if l do have ms l can go back to my old neurologist because he went to practice ms and l am going to his x-wife for my eyes. But right now l can't go to him unless l am referred. So in other words you have to stay in your house until you get a diagnoses or you pass out. I want to go out with friends but l am afraid l will pass out and l already fell with one of my friends going to the movies.So my daughter was telling me it could be a flairup of autoimmune disease. So l guess l will just go out with my friends this weekend and enjoy myself and then go to my appointment next week and educate my general practice doctor. It seems like a waste of my time but l want him to fill out a form.

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@techi. It sounds to me like you are having panic attacks. Your description is exactly what was happening to me when i used to have them. If i was in a store or anywhere with people arpund, i would have to leave and go home immediately . I wass afraid i would start screaming or pass out and people would think i was crazy. I finally was given Citalopram by my PCP, which was titrated over 6 months from 20 mg up to the dose of 40 mg. At first i felt weird on it for about 2 weeks after which i felt better and better. It might be helpful for you as well if you're not already talking an antidepressant.

I saw where earlier you said you can't take NSAIDS. I can't either, so I take Tylenol now, 500 mg extra strength. Of course I don't drink and I only take it occasionally so it's safe. Have you tried it?

Last, when I was having problems with panic attacks it was very helpful for me to have my therapist to talk thins thrpugh with. You might also find it helpful to talk with a therapist. When I was so stressed I would get overwhelmed with things and had trouble thinking clearly so I could sort things put. Just a suggestion for you. I hope you can find relief and peace.

Best wishes, GailB

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I was on an antidepressent before and l said l will never take them again. I had an allergic reaction and that what l think caused me to have problems with my liver. I have also mild glacoma but l was fine before that. I just had a headache for 3days and then l went shopping. I was glad to get out but l just started feeling hot and like l was going to pass out. So l don't know how that can be a panic attack. I was talking to people like l usually do. And l am a person who likes to be around people. When l was working my supervisors always liked that about me. And l can take tylenol either l am allergic to acetaminophen. When l was in the hospital they kept giving me these meds that now l can't take any meds for pain. And the reason why l talk about my general practice doctor because when l was falling after l had encephalitis he didn't believe me and l tore my acl , and rotor cuff. Also when l told him my bottom was hurting l had to go to aftercare because he wouldn't listen to find out l had a mass in my pelvis. And when l was falling when l was going to physcial therapy, l had to have 3 root canals. And my dentist was surprised he was taking it so lightly. So now he tired of doctoring and he's ready to retire. My sister went to him and she's healthy but she was surprised he didn't recommend she has a colonoscopy and the last one she had was over 10yrs ago.. And in my state we rate the 46 worst healthcare in the US in 2016 and l know that it worst now because we are in default. So l really don't have confidence in healthcare here so that why l have to travel to the mayo clinic until l move.

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@techi

I was on an antidepressent before and l said l will never take them again. I had an allergic reaction and that what l think caused me to have problems with my liver. I have also mild glacoma but l was fine before that. I just had a headache for 3days and then l went shopping. I was glad to get out but l just started feeling hot and like l was going to pass out. So l don't know how that can be a panic attack. I was talking to people like l usually do. And l am a person who likes to be around people. When l was working my supervisors always liked that about me. And l can take tylenol either l am allergic to acetaminophen. When l was in the hospital they kept giving me these meds that now l can't take any meds for pain. And the reason why l talk about my general practice doctor because when l was falling after l had encephalitis he didn't believe me and l tore my acl , and rotor cuff. Also when l told him my bottom was hurting l had to go to aftercare because he wouldn't listen to find out l had a mass in my pelvis. And when l was falling when l was going to physcial therapy, l had to have 3 root canals. And my dentist was surprised he was taking it so lightly. So now he tired of doctoring and he's ready to retire. My sister went to him and she's healthy but she was surprised he didn't recommend she has a colonoscopy and the last one she had was over 10yrs ago.. And in my state we rate the 46 worst healthcare in the US in 2016 and l know that it worst now because we are in default. So l really don't have confidence in healthcare here so that why l have to travel to the mayo clinic until l move.

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Hello @techi, I'm really sorry you have doctors that aren't listening to you. Hoping you get results through Mayo Clinic on your visit. I wonder if your Mayo Clinic doctor/team would be able to recommend a local doctor in your network? I'm not sure if they able to do that but it's worth asking.

John

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I thought l would mention that to them since a lot of the doctors are retiring. The nurse practicioners and pa are doing the most medical now and maybe that's just here. I remember when in 1978 l was diagnosed with shingles and here they just started talking about it in the past 8yrs. So we are just alittle behind. So l will ask them. Thank you John.

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@techi

I knkw l looking for an attorney. I dont like to do this but they need to be held accountable and my insurance company also because l kept telling them what was going on. And when the insurance on call nurse told me not to take 2 meds together and l told my doctor she said that was old news, now you can take them together. I called the pharamcy and they told me you shouldn't. Yes that is medical negliance and now she doesn't want to take care of me. Now l am not sure because our insurance doesn't want to renew a contract with them but she didn't even refer me to another doctor.

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John l looked into the patient advocate and l am waiting for a call back today she was out of town. I am waiting to see what she can help me with. I know you have been reading the comments and l was so happy to find another article online about autoimmune encephalitis and when l go back to the mayo clinic l will show the neurologist because l am suppose to have the PET and that can't tell you if you have autoimmune encephalitis and l was diagnosed with that in 2014 and it doesn't go away unless you have been treated for it. So they said if all your test come back normal then a doctor who is trained will look further into it if you have the symptoms but if a neurologist is not trained they will say its mental. And their is also another PET that should be done if the regular one comes back normal. And they are looking to see if l have fmd but l don't they are just going by family history. Look at the lancet neurology very interesting article.

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@techi

I knkw l looking for an attorney. I dont like to do this but they need to be held accountable and my insurance company also because l kept telling them what was going on. And when the insurance on call nurse told me not to take 2 meds together and l told my doctor she said that was old news, now you can take them together. I called the pharamcy and they told me you shouldn't. Yes that is medical negliance and now she doesn't want to take care of me. Now l am not sure because our insurance doesn't want to renew a contract with them but she didn't even refer me to another doctor.

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Thanks Lisa (@techi). The Lancet Neurology is really an interesting journal that provides a lot of the latest information available. Not sure if this was the article but it's in PDF format so you can print it and show your doctor/neurologist.
https://aealliance.org/app/uploads/precis-of-lancet-neurology-autoimmune-encephalitis-paper-corregido-por-dalmau2_editora_5_63_1.pdf

I'm hoping you can get some results with the patient advocate. Can you let us know if she is able to help you?

John

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