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Old 10-05-2007, 10:13 AM   #1
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Another Frustrating Neuro Appointment

I had my nerve conduction test which they said was normal then went to see the neuro.
He, as I said before, without performing ANY test beside blood decided we should sit this out for awhile. My Pc sent me to him to rule out MS and I refused to do this until thats done. Without tests, how can it be ruled out?


The neuro decided to call my symptoms fibromyalgia and prescribed lyrica. I asked him what this is used for and he plainly said "to make you feel better". I don't want a name for whats going on with me just to have a name. I want to find out whats wrong because my symptoms are there.


I asked him about an MRI and he said these are costly and a waste of time because fibro can show as legions as well. And if he did the brain and found nothing, then I would say that it was because he didn't do the spine. He said to spend $6000 on this is a waste of money.


I have so many symptoms that my pc feels ms could be the culprit so I asked this guy what reasons he has for NOT thinking down that avenue and he said because I don't have balance problems and because I have pain in my knees.


I became frustrated and i wear my heart on my sleeve and have never had a problem showing my emotions. I started to cry and said that I am not the person I was a year ago and this is very frustrating to me to not know why. And that I need to rule out everything before I accept fibro as a dx.


He threw his pen down and told me I need to find a councelor because I am depressed and theres my problem causing my sx. Now, that made my tears go away and I got angry. I kept up my composure, told him that my family has been in ongoing counceling for other issues and that I have discussed this with her and she thinks this is a blessing because I always do too much for others and maybe this will force others to step up. I have accepted this but I need to know WHY!!

I do not fear having a dx at all and he said I need to talk with a councelor to deal with the way I feel. I have excepted the changes in my body, have learned to take care of myself, I rest when I need it and I have decided that I won't sweat the small problems in life. My family has noticed the changes that I've made on my own to cope with this. So, is the fact that someone sheds a tear indicate depression? I don't think so. I think in generall I am a happy go lucky person with alot less energy. But I still find pleasure in my life.


I told him I will continue until I get answers and will not accept a cop out dx just to make me go away.
I brought my hubby with me for moral support because he tends to speak his mind. I love him dearly, but he just sat back and I stood up for myself!!

He then took me to an exam room and grabbed my hands and said that he is human and can miss things. He said he will request evolk potentials to be done and if that shows nothing, he'll order an MRI. I know he fealt my frustrations.

He still didn't answer my questions in reguards to the lyrica and my pc has already told me that he doesn't think it's a good idea at this point to take medication to mask my symptoms. He wants to find out the cause of them, which I agree with. Can anyone explain what this is used for?

I wonder if I'm being too pushy with this guy in expecting him to rule out ms before saying its fibro. Any advice on this?

I think this board is a great source of support and knowledge and I have learned how to better communicate to my dr because of all of you here. I am thinking of calling my pc at this point to let him know whats going on but I new the advice here would be helpful 1st.

Thanks so much!!~ Cindy

 
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Old 10-05-2007, 11:08 AM   #2
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Re: Another Frustrating Neuro Appointment

Fire your "doctor" because I do not think your doctor is thoroughly treating you. Find a doctor who will test you completely and eliminate possibilities. If it is Fibro, then let it be because all other possibilities are eliminated. (My opinion, but if the evidence is not 100% sure for Fibro, then I would not take the meds for a "possibility".)

Last edited by MSJayhawk; 10-05-2007 at 11:17 AM.

 
Old 10-05-2007, 12:03 PM   #3
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Re: Another Frustrating Neuro Appointment

Cindy, you're not being pushy -- I think you did a GREAT job being an advocate for yourself. I agree with MSJayhawk about the Lyrica -- or at least, speak to your PCP before popping any pills. You should keep your PCP in the loop anyway and make sure he/she gets copies of all test reports. If you have a good one, they can be an enormous help -- mine was for me.

The comment about Fibro and lesions is a little freaky to me. MS lesions have specific characteristics like shape and size so to an MS specialist, the distinction should be apparent. This is tricky of course, because with MS, the disease causes lesions so it's possible for it to be active before that happens.

I can't speak to the EVPs because I never had them but my physical exams have always been fine so I at least THINK my EVPs would be normal -- and I DO have MS.

I'm glad you have another appointment scheduled but before you do anything, I'd definitely call my PCP to get their opinion.

 
Old 10-05-2007, 04:10 PM   #4
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Re: Another Frustrating Neuro Appointment

Cindy, wow. Good for you! I agree with both Jay and Beary....first, fire this guy. Hes useless to you and anyone who makes you break down in tears, instead of being supportive and helping you avoid them, shouldnt be a doctor, let alone yours...secondly, Beary is right. MS lesions have a specific look and usually placement to them. They arent ususally confused with Fibro at all....
Lyrica. Lyrica is a medicine designed to work on nerve pain. It is prescribed for Fibro, MS and even Reumatoid Arthritis patients. Its addictive, its an anti-seziure drug which can cause seizures if NOT taken properly or if you stop taking it abruptly. I tried it for my horrible hand and finger pain, which is all nerve related- and it did nothing. I also tried Neurontin, and a few others...they dont work on me....I wouldnt take Lyrica without more tests being run. It doesnt cure anything, it can "mask' symtoms and it can definately make you feel sluggish, slow and increase your appetitie...unless this sounds good to you, I wouldnt take it until you have a real valid reason to.
Keep your PCP in the loop...also good advice from Bearygood...and keep plugging away.
Good luck to you, keep your chin up. You did good!
Nikki
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Old 10-05-2007, 07:53 PM   #5
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Re: Another Frustrating Neuro Appointment

Cindy,

You handled yourself very well.You stuck up for yourself and you got this neuro to listen to you.Sometimes we have to completely loose our composer to get a DR to listen.

This DR is definately not patient friendly,but he is willing to get the ball rolling,a plus in your favor.I'd let him run the test,get through that process then depending on those results,I 'd get a different DR.

The only reason I'm stating this is because it can take months to get into another neuro and at least this way test have begun.

To many neuro's want to DX neurological disorders as being fibro or depression,before seeing a whole picture.

At least he listened to you and admitted he could of over looked something,but its a shame you had to get emotional for him to listen.

I wouldn't take the lyrica either,especially if you are not for sure why he is prescribing it.

I would definately keep the pcp in the loop and make sure he gets copies of all test results.When you have the evoked potentials done,ask to sign a form to get the results sent to the pcp.

I'm proud of how you handled this DR.

 
Old 10-05-2007, 08:30 PM   #6
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Re: Another Frustrating Neuro Appointment

Thank you all for being here!!

While I was in his office, I was thinking all of these things you all give for advice and believing in myself and standing up to him. I came home yesterday from this appointment, he had me self doubting what I strongly believed in my heart was right. I was so exhausted when I got home, I litterally crawled up the stairs and collapsed for the night at 6:30. I was so angry that I went to him for help, and he created undo stress himself. I think he finally agreed to do more testing when he knew I was going to push. Maybe he's afraid he'll be proved wrong and figured it's best to listen!!

I wanted some reassurance that I should stick to my guns on this. And thanks to all of you, I will!!

I have a sceduled appointment with another neuro Nov. 6th, which I made 3 months ago. I kept it in case I needed another opinion. I was feeling quilty about going to another dr while working with another but this guy has given me the green light and reason to pursue another opinion.

I am going to call my pcp and give him a heads up on this. I definately am not going to fill the script for the lyrica at this point. I definately don't want to take an addictive drug for an estimated guess on his part. Don't we feel sluggish enough? My main issue is not pain. Its the tingling, brain fog, weakness and fatique that has kicked me in the butt. So why prescibe pain meds?

You guys are the greatest and I am so thankful for all of you!! You've been a great help!!

Have a great week end

Cindy

 
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