Neuro Number 8

[Momzilla]

Hi, I thought I'd just give an update on my recent visit to the new neuro my wonderful Dr. McDreamy referred me to. He was very nice, as McD said he would be. It was sort of a bad day to go, as I had a moderate migraine and took Exedrine Migraine, which has a lot of caffeine AND drank 3 cups of coffee to help with the headache. I was pretty jittery and surely appeared anxious. My tremors were uncontrollable, but I am used to them, and all the people in my life are, so I forgot to mention it was because of all the med/coffee. I had meant to ask him to increase the dose of my maintenance migraine med, but my concentration was poor, and I never did.

I am just one of those people who for some reason just gets a little nervous in the doc's office, too.My blood pressure is fine when I'm in the hospital, but always up in the doc's office. White coat anxiety they may call it. And over the years, I have been particularly leary of neurologists because so many have told me I'm, well...crazy. Crazy sounds cute coming from your husband or children who love you, not so much coming from someone you come to for an actual medical diagnosis!

So, Number 8 went over my hospital chart and test results and asked what my last neuro said. I told him that when I was in the hospital over Mother's Day they told Dr McDreamy I had demyelinating disease, but that they'd never used that term with me. They'd really never diagnosed me. He said (obviously nothaving heard me), Demyelinating disease like MS? Whoever told you you have MS should not have done that. I don't think you have MS.

I knew how it was going to go. But it didn't seem SO bad. He looked at my tests again. He asked if I had ever had an MRI of my thoracic spine. If we could even find one lesion there.... I said I'm sure I've had a couple MRIs of my whole spine and brain. Yes, he found it.

He did say he was happy to prescribe Solumedrol for me when I am weak since it works for me. I was pleased with that, at least. He did want to see me when I'm actually having an episode and do testing then. He was displeased that my MRIs had been done without contrast the last several times.

I told him I had an abnormal evoked potential done at my last neuro's office and he wanted to see it. I told him I'd get it for him. I also said I had high protein in my LP once. He said he didn't seeit. I told him I'd look for it.

He examined me. With my jeans on. Very quick exam. He tested my reflexes through my jeans and because of the coffee I had really bad tremors. He had me follow his finger with my eyes. That was the whole exam.

When I got to work the next time, I started to look for my LP with the high protein. To my surprise, his office notes were there. They were AWFUL. He was very nice, but said that I had seen a psychiatrist who said my symptoms were psychogenic. (UNTRUE) I'm CERTAIN he misunderstood or didn't hear me correctly. The psychiatrist told me to try and try to find a neuro who would finally find out what was wrong with me physically; he did not believe it psychiatric.

He also said I was anxious, that I was shaking to produce false reflexes. In the end, he said my episodes were caused by anxiety/conversion disorder.

I am now hesitant to go back to see Dr. McDreamy. I'm afraid he won't take me seriously anymore. I need some encouragement. I am pretty down to tell you the truth.

On top of all that, I have headaches each day and have a very difficult time concentrating. It's making working very hard. My husband keeps telling me to just quit, but I know we can't afford it.

I hate to sound so blue. Things aren't that bad. It's just that the people here are the only ones who truly understand.

I hope all are feeling well. Peace!  

Enjoy the holiday!!

Momzilla

[sllowe]

OmG Woman!

Call Dreamy's office. ASAP! Your exam was shotty at best - I don't have to tell you that. I do think Dreamy would want to know this.

You went to this one for fresh eyes - you didn't get them. All this is so disappointing. I so thought this was your ticket, Z.

You have my undrstanding and support, always.
-Shell

[doni54]

Hi Zil,

I'm so sorry that this has happened to you again!!!  I've been thinking about you and wondering how things were going.

I told my hubby the other day that sometimes I think dealing with MS neuro's is a mistake as they rarely listen to us and seems they have made up their minds before they even talk to us.

I'm not impressed at all with mine.  He finally did admit that he KNOWS that I have MS, he just wants to have more tests to make sure!!!  He promised that after my LP that he would prescribe some meds to help me with some of the symptoms.

It's been 5 wks and another MRI and still no meds or answers.  Sound familiar?

I've been wondering about trying a neuro who isn't an MS specialist, might have better luck.

I do know that you are NOT crazy and the thing that's going to make you that way is crazy, uncaring neuro's...haha

Don't give up Zil, keep on trying to find that one neuro that will actually treat you right and listen to what you're saying.  If I don't hear anything soon or get my dx, then I'll be headed to neuro #3.

I'll be keeping you in my prayers.

Hugs,
doni

[Momzilla]

Very good advice. I sometimes start to question my sanity to tell you the truth. My husband is a great support. I love your idea. Thank you very much.

Hugs back! Feel well!

Zilla*

And thank you, Alex! Good luck to you, as well! Peace,

Zil*

[supermum_ms]

I'm not sure what to say beyond sorry this keeps happening to you!

It sounds like the neuro was hard of hearing or he saw something in your medical notes (psychological?) and possible made his own interpretation of what ever you said to suit that theory. I think it might be worth going through your file and finding out how prolific the mental health theory is within it, it might explain why mental health got on his mind.

You've seen a psychiatrist and his report should be in those records, maybe the conclusion that you dont have a psychological condition is being over looked or isn't getting the attention it deserves. I think i would be putting together a file with copies of all the abnormal tests results and i'd include your phyc evaluations and conclusion too. Send it too him as you said you would and include a brief note re: These are the test results you requested etc etc.

It would serve 2 purposes, firstly and most important it is condensing your file to only what is clinical evidence of physiological and secondly it puts the mental health theory to rest because that theory has been tested and found to be incorrect.

The other idea i had involves dr mcdreamy (lol) I was thinking you could contact (preferably by letter or email) dr mcdreamy and being as professional as you can, ask for his advice on if you should continue to see this dr he refered you too because this dr had written in his notes "that I had seen a psychiatrist who said my symptoms were psychogenic. (UNTRUE) I'm CERTAIN he misunderstood or didn't hear me correctly. The psychiatrist told me to try and try to find a neuro who would finally find out what was wrong with me physically; he did not believe it psychiatric."

Stressing your concern regarding miscommunication of other things you said and that this dr also including in his report "I was anxious, that I was shaking to produce false reflexes. In the end, he said my episodes were caused by anxiety/conversion disorder." when the possibility of mental health has already been fully explored and discounted. Id acknowledge he may not of seen the mental health report but it doesn't instill confidence in future appointments, if he can draw that idea so quickly and with out even looking at my abnormal test results, which he has requested i send him. [just my thoughts]

I'd be rather uncomfortable the second time i see him if I was going to have to produce the evidence and therefore correcting him on his idea of mental heath, its very hard to unring a bell if you get my meaning.

Anyway HUGS.............JJ

[HVAC]

May be another Neurologist? I try not to say much. In my experience that goes farther for me. Of course I take the cake as far as Doctors go more than I can count and it only took 40 years or so for a diagnosis. Also I was told to leave my shoulder chip at home, go in in calm with an open mind. That is hard for me. If I really feel I am getting no where I do not go back. Sometimes I thought I was being dismissed I actually was not.

Hang in there

Alex

[Momzilla]

I just came back and read my goofy post. I should say I work ay t a hospital and have access to my hospital chart and reports. That's how I saw his office notes. And why I was looking for the LP results.... As i said, my concentration is icky!