View Single Post
Old 09-18-2016, 10:54 AM
Caprice Caprice is offline
Junior Member
 
Join Date: Jul 2016
Posts: 9
5 yr Member
Caprice Caprice is offline
Junior Member
 
Join Date: Jul 2016
Posts: 9
5 yr Member
Angry

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 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
Hi Annie, Thank you for your response and advice. I have had full blood tests including Vit B12 and Vit D. I take thyroxin for my hypothyroidism. Anyway, I got to see the other neuro. He didn't even have my letter, I had sent him, in front of him. He was bored and he was tired. Anyhow, it appears he had been talking to the private neuro, as he said my symptoms were pyschomatic and manifested. I said even my dysphonia? Yes, he said your brain is doing it. So, I lost interest in him. Interesting. My brain is responsible for my severe speech impediment, my breathlessness, over the last 18 months and recent breath shudder, my blurred vision, my difficulty in swallowing which, as I eat, becomes more difficult to swallow. Facial weakness along with mouth and tongue weakness as confirmed by the Swallow Assessor, recently. My extreme tiredness, where I spend 14 hours in bed a day. My leg weakness and sore calf muscles, though this could be the diagnosed camptocormia I have. Lastly, my low oxygen staturated levels. Well, in a way, I'm relieved I don't have to take strong drugs, especially steroids. However, he said I could have degenerative dementia, as I'm 75 years of age?? I reminded him that I recently passed a hospital cognitive reasoning test with flying colours. So, now my side of the story. When I returned home I wrote him a three page letter. I told him that I would not accept his diagnosis of physchomatic basis, as he was not a qualified psychiatrist. Secondly, I told him he had carried out very little diagnostic testing and that I was having another blood test for the other two antibodies he had missed, musk and especially tintin which is found in elderly folk, I told him elderly people rarely present with limb symptoms, only 19% to 27% do, so EMG testing usually results in a negative outcome. I also said if I didn't have MG, then I could have spasmodic dysphonia which presents with facial weakness and swallowing difficulties. I doubt whether I will hear from him ever again. Good. Apparently, I've been told I might have to visit up to 6 different doctors before I get an accurate diagnosis. Sorry, Annie, for the long rant. I am quietly determined to find out what's wrong with me. It seems to be a new fashion to term all "I don't know what is a matter with you" under the heading of pyschomatic. There's even an intellectually embarrassing book written recently by a woman neuro, called "Its all in your Head" which, to my mind is a work of fiction rather than fact and a neuro who disbelieves her patients.xxx
Caprice is offline   Reply With QuoteReply With Quote