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Old 09-13-2016, 02:26 AM
Caprice Caprice is offline
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Join Date: Jul 2016
Posts: 9
5 yr Member
Caprice Caprice is offline
Junior Member
 
Join Date: Jul 2016
Posts: 9
5 yr Member
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Quote:
Originally Posted by AnnieB3 View Post
Caprice, For a doctor to have a few negative tests and proclaim that all of your symptoms are all in your head is negligence. A negative test doesn't mean that nothing is wrong with you. It proves nothing. It probably means that they haven't found the correct tests to run.

Plus, if most of your weakness is in your legs, why wasn't an EMG done on the legs? Why wasn't a Single Fiber EMG done?

Do you have any other illnesses or abre you on any drugs? I'm asking because some drugs can cause issues as well.

Have you had other tests done such as B12, D, thyroid, CBC, or a comprehensive chem panel?

An MRI was clear. But that doesn't reveal everything! It's good it was, for it rules out things such as MS (usually). Plus, how can you have degenerative dementia when your brain MRI was clear? Do you have a copy of the report? Sometimes they don't tell patients everything.

There is no way any of us can tell what is going on with you. But what I can tell you is that you have not received sufficient care. The conclusions being made are not scientific.

Don't mess around. Go directly to a neuromuscular specialist and ask them to help you. Don't say what you think it is, just say that you weren't sick and then you were. Write down the symptoms and when they began (or have someone else write them down for you). Have someone go with you to the appt. so that they can confirm what you've been through.

You should see a pulmonologist as well. They can clearly define what might be going on with your breathing. They can do breathing tests, test your O2, do an arterial blood gas, etc. They can even do a sleep study or overnight oximetry.

When was the last time you had an ECG of your heart?

If you can see a neuro-ophthalmologist, that would be useful as well.

Don't despair. Unfortunately, many people have gone through a lot of doctoring before receiving adequate help, no matter what is going on with you. I don't know why, but neurologists tend to be some of the most inhospitable doctors.

And if neurologists cannot initially figure out an issue, they do tend to say that a health problem is all in our heads—maybe because so many of them are psychiatrists as well. That is especially done with women. No, that's not my opinion, but a conclusion from experience and research.

A well-known MG expert once said that it takes a year for a man to be diagnosed with MG, but it takes an average of seven years for a woman to be. I tend to think it's not only people with MG who encounter those issues.

There's a lot of prejudice encountered along the way while doctoring. Don't internalize that reality and make yourself even sicker. I'm sorry you are doing so poorly and that a doctor didn't do enough to help you. But there are very good doctors out there, willing to help patients.

Every second someone lives is valuable. Simply because you are 75 does not mean that you deserve less care.

Again, don't say you think you know what is wrong with you. Only focus on the symptoms. You may not have MG and you don't want to lead a doctor down the wrong path or inadvertently make them think you know more than they do! Doctors hate when patients tell them that they think they know what is wrong!

Get some rest. Wake up tomorrow and find some better care. Go to the hospital if you are in bad shape.

Whatever is going on, you need someone to care for you. Probably a bunch of someones.


Annie
Annie
Thank you so much for your supportive reply and hug.x. Yes, this neuro has done his best to make me fearful and want to hide away. I'm now frightened that I will be seen as pyschomatic if I complain of further symptoms. I can see myself getting weaker and then just expiring without any help from no one. What a nightmare. I have hypothyroidism and my B12 levels are fine. I take the dreaded bisoprol as without it my blood pressure goes sky high. I tried stopping it but my blood pressure was reading 192/135 which is the highest ever. I asked for B12 to be tested when I first started speaking incoherently. The neuro will write to my doctors and state my illness is all in my mind. I have been doing some research and it appears that neurologists now are very fond of labelling patients physchomatic when they can't find an answer. I mean how on earth can I manifest a half closed eye lid or garbled speech, which is now consistent. I'm not able to speak normal anymore. When I was admitted to hospital, my discharge notes read anxiety? Well, I wrote to the head doctor and demanded an apology as, fortunately, I've never had any mental illness in my life. I got an apology. So now, I'm writing to this neuro to challenge his findings. I refuse to be labelled physchomatic. I will feel better if I do that. I think he will try to stop my night oxygen as he said my breathlessness was caused by anxiety. so, I must write it's all I have left to preserve my self dignity, no one else will. I've never been treated so shabbily in all my life by a doctor. I told him I would never waste his time deliberately or see my husband suffer worrying over me, as he has a heart condition. He retorted oh when its physchomatic you don't even know it. I just can't cope with such behaviour from the very person I went to for help. With my love to you and all those who so kindly took the time to offer their support, which means so much to me.x
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"Thanks for this!" says:
AnnieB3 (09-13-2016)