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View Full Version : Saw the Nuro, I give up I am tried



lizbond36
06-03-2011, 09:16 PM
I went to see the second Nuro Tuesday, yay I know it took me forever to post it LOL. One he told me he doesn't think its MS, MS is in the front of the head. I have two lesions in the back of the head. He wanted to do blood work, spinal tab, Nerve testing. I thought ok get these test out of the way. Till he went into his speech about if these test come back neg then its in your head. Sure he didn't say it that way but boy he know how to work it around it. So I will not take those test but maybe take the blood work. (B-12 ETC) however with the Lupus meds what if those are Neg but that because of the meds I am taken? I am looking for a cure that will never come so I am done and I am going to live life to the fullest. Best way I can :-)
Hugs
Liz

tgal
06-03-2011, 09:23 PM
How DARE he say that to you! Girl, you need to fire that doctor and get one that "gets it". I don't know if you have Lupus or MS or something completely different but sick is sick and if he doesn't want to work hard enough to find out what it is then you don't want him anyway! I know that it is hard. I know you want to give up and doubt yourself now. Many of us have gone a LONG time without a diagnosis and it is so frustrating! I can't tell you how many times I cried and threw my hands in the air because I thought I was nuts or that no one was going to take the time to figure it out. You deserve some answers. You deserve someone that will help you get those answers.

He is the one with the issue. Not you! Once again I say fire that old bird and find someone that cares enough to help you figure it out!

Saysusie
06-03-2011, 09:31 PM
First, let me say this..never allow any doctor to make you feel that you have to quit or give up. It is so sad, but true, that many of us know so much more about this disease than most doctors. So, do not allow a doctor to tell you that it is all in your head when you know that it is not. What you are feeling and going through is real, no one has any right to tell you that it is not.
Second, I would suggest that you do take the tests and, regardless of their outcome, insist that you be treated for your symptoms. If he refuses to do so, take all of your medical records and test results to another doctor; one who know what he is doing, is knowledgeable about the disease, and who listens to you and takes you seriously.
Yes, it is possible (and happens often) that your medications are alleviating your symptoms and causing some of your lab results to become normal. That is one the most important reasons why we take the medication! I am mortified by how many doctors want to claim that there is nothing wrong with us because our labs come back normal. The disease, itself, changes and goes through periods of relapse and remission..so it is natural to think that our lab results would confirm this, not dismiss our diagnosis or symptoms.
Continue to take charge of your health care, to insist that you be taken seriously, to do all that you can to ensure that you are as healthy as you can be. We are here to here for you.

Peace and Blessings
Namaste
Saysusie

Saysusie
06-03-2011, 09:35 PM
Tgal;
How funny, I think that you and I were writing at the exact same time and apparently we were thinking the exact same thing :-)

Peace and Blessings
Namaste
Saysusie

tgal
06-03-2011, 09:41 PM
Tgal;
How funny, I think that you and I were writing at the exact same time and apparently we were thinking the exact same thing :-)

Peace and Blessings
Namaste
Saysusie

It must be in the air! Linda and I did it twice tonight! Yes, Great minds think alike Susie!

Linda From Australia
06-03-2011, 09:44 PM
Just a thought, if you have diabetes, and take your insulin, then when you test your blood, and it is within normal range, does that mean you are not a diabetic?

I have not been to medical school, and not as smart as the doctors that treat me, but I can work out that medication brings us back to a more normal range.

Ok here is another thought, my skin is fair, but if I go out in the sun everyday, and get a really dark suntan, does that make me an Aboriginal because I live in Australia and have dark brown skin ... (perhaps this example isn't appropriate, sorry for that)

Some doctors really think of stupid things to say to people, especially to sick people. I think they do that because people who are sick are not usually that fast to give a equally stupid but smart responses. Perhaps we could all have a list of comments in our pocket so when the doctor says a stupid thing to us we could just look at our list and say something really smart back to them.

Rob we really need your help here

Gizmo
06-04-2011, 05:32 AM
Just a thought, if you have diabetes, and take your insulin, then when you test your blood, and it is within normal range, does that mean you are not a diabetic?

I have not been to medical school, and not as smart as the doctors that treat me, but I can work out that medication brings us back to a more normal range.

Some doctors really think of stupid things to say to people, especially to sick people. I think they do that because people who are sick are not usually that fast to give a equally stupid but smart responses. Perhaps we could all have a list of comments in our pocket so when the doctor says a stupid thing to us we could just look at our list and say something really smart back to them.

Excellent, Linda! I would argue that you are smarter than most doctors, who have no idea what it is like to fight through each day with a chronic illness. I love the diabetic analogy. I think that is a great comeback, especially since it is one doctors can relate to. Another might be that taking drugs that stop seizures doesn't make epilepsy go away, it just controls it.

Liz, the lesions in the back of your head showed up on a CT scan or MRI, right? How can he say that if the other tests are negative that your problems are psychological? If he says that straight out, he is the one who needs his head examined. I would go prepared for that possibility and have a list of questions that challenge his assertion. I would also go ahead and book an appointment with another neurologist, since they tend to book WAAAY out. Just do your research ahead of time to find a good one.

Doctors are human, and sometimes they say stupid things or what they say doesn't come out the way they meant it. I've had good docs say dumb stuff, but when I have nicely questioned if that is what they really meant, we have cleared the air. The bad ones just get defensive.

Nonna
06-04-2011, 05:32 AM
I have come to notice that most specialists focus on their specialties and can't see the whole picture. I usually remind them with a gentle " how will the lupus meds affect this test. Should I stop taking them for the test? Or how does my neuro problemsand the lupus react to each other. Then the neuro stops and thinks for a few and gives me a reasonable answer. Sometimes they need to be guided to stay on track.

lizbond36
06-04-2011, 06:09 PM
Thank you everyone, the thing is I went in to see my first Nuro Jan 2011, Many of you know traveling isn't all the best LOL. I went looking for those answer I bought all of my medical records and my first MRI 2007. I did the MRI and C-spinal he called my up and told me he found nothing that I need to see a rhumy. I looked at 2007 yes it did look normal beside a few white matter and 2011 tons of white matter. I went looking for the second Nuro and then I was DX with Lupus May 2nd 2011 from my Rhumy. I kept that appt with the nuro. I showed up again with all of my records, Both MRI test, C-spinal and X rays plus MRI of my Left foot. He didn't look at my test nor my records. He rub my leg with this rod thingie and asked me (on my right light) If this was a dollar (Moved to my left inner leg) what would this be? I have never heard any doctor ask me that so didn't know what he wanted, and I said 2 LOL. Then he asked my about head injury, if I was abused ETC.

Then he went onto his speech where he saw this man that was having a heart attack but not really this man was under stress and he made himself sick. I become angry I was about to walk out of that office and he asked me why I need my cane, Last time I checked that was called a forearm crutches, why I wear my bike gloves. Gee your an idiot if you walk with crutches what happen? Your head gets sore. Sorry I am back on the vent box, felt like I was an idiot and I wait till I see my Rhumy in Augs and ask him.

Hugs
Liz

magistramarla
06-04-2011, 09:02 PM
Liz,
I know just how you feel. I had a great rheumy in Texas (third try), who diagnosed me and started treating me.
I then moved to California, and got one of those rheumys that thinks that since the blood work is normal, I don't need to be treated. Like the others have said here, my first reaction was "Duh, wouldn't the Plaquenil and MTX be affecting those results?" The neuro that she sent me to was also useless.
I'll be moving back to my great rheumy in a little over a year, so I'm just using this doofus to refill my prescriptions until then.
Keep looking for a good team of docs - they do exist.
Hugs,
Marla