Originally Posted by AnnieB3

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

Originally Posted by AnnieB3

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 are 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