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Old 11-21-2011, 05:47 PM #11
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Batman, very well put...

Doctors have a narrow set of protocols when it comes to MS, since it is so tricky and does mimic other diseases. Time and listing major symptoms is the friend of the doctor and patient...but as a patient who had these symptoms for years before a major spasm put me on the diagnosed side, I know how scary and frustrating it is, wondering what the heck is going on in our body.

It is easy for me to say "Live your life to your fullest, no matter what the symptoms do..." But even if we are on the diagnosed side of things, we have to live that advice also. Time is short, life zips by, and I know I don't want to be on my deathbed regretting spending so much time thinking about what is wrong with me...granted, the symptoms occasionally make that mandatory, but I try to live a full life, in spite of my symptoms.

Eat a good daily diet, try to get some exercise, even if it's only a walk up and down your street, spend some quiet time getting in touch with your inner self, and as I said list your symptoms and how you feel in a log. but most of all, try to live your best life, no matter what...today is all we have...

Hugs to you...know that those who come here get support, hugs, an occasional laugh and knowledge that they are not alone...
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Old 11-30-2011, 08:50 PM #12
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Originally Posted by Toooldforthis View Post
Hi, I'm new on here too. I was just reading a few threads and going to introduce myself under new people, when I found what you wrote. I had the same problem, for 10 years. Everything was in my head, fibro, or possible bipolor. Then a year and a half ago, Dr #4 found my thyroid numbers were off. Once on meds for it, it has really helped some of my problems. Now, I'm still having issues with balance, double vision, tight muscles, sudden pains in my head, and a few other great things that I've had for around 5 years. So my new Dr is sending me to a neuro with specialty in MS. She thinks this may be the other part to my puzzle. I see him in Feb. But anyway . . .I wanted to tell you about the thyroid. I wish my Dr would of ran the bloodwork for it 10 years ago.
I was diagnosed with thyroid issues before bipolar, fibro, and my whole list of stuff. I have never seen an improvement on the thyroid meds either. Thank you for the suggestion though!
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Old 11-30-2011, 08:55 PM #13
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Holdingontohope, my sister has fibromyalgia and it is just amazing when we talk about our symptoms that they can be so similar. Just as long as you get help for your symptoms. That's the main thing. If this doctor doesn't help, find one that will.
Yes they are similar in many ways. I found out when going to my new rheumy for the fibro that when they rule out lupus they usually rule out MS too, but they never did for me. He also was suspicious of my symptoms saying that some of them couldn't be explained by fibro and seemed more neurological. I do trust his assessment as he is well known nationally as a doctor and researcher. He knows his stuff. He doesn't doubt I have fibro but thinks there is much more going on with me. I won't stop til I have answers or have turned over every stone.
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Old 11-30-2011, 09:05 PM #14
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If you go to a doctor with a list of 30 different symptoms, their very first thought is going to be that you are a hypochondriac that is disease shopping. I don't say that to knock anybody who truly suffers from alot of symptoms...I say it because doctors are trained to look for the most likely scenario and then to work from there. Anybody who comes in and attributes every possible ailment to a single cause is somebody who is going to trigger that kind of response in a doctor.

If you have never been to a hypochondriac forum online, go take a look some time. There is a huge fixation on things like MS and cancer, and many of them are convinced they have one or both, and can rattle off a huge list of their symptoms. Again, not a knock on anybody here...just saying that doctors see those folks too and have to try to decide with each patient, what is real and what is not. With a disease like MS, where there is often little in the way of physical evidence for our disease, and the symptoms are often fleeting and hard to measure or test, it can be very dificult for them to sort the wheat from the chaff and determine where to start with testing. An MRI is a good start, and a sign your doctor is not completely blowing you off.

My opinion has always been that people who think they might have MS are better off describing maybe 3-5 of their "worst" symptoms or the ones that most impair their daily life, and then saying "here is a list of other things I am encountering, but I really don't know if they are related or not." That gives a doctor a much more limited set of things to look at. They can test for evidence of other things that could cause the "main symptoms" and then use the other list as possible corroboration of what they think it might be. In the end, doing it that way might help lead the doctor through the process of elimination that is an MS dx, without first starting with the question of whether they are dealing with a hypochondriac.

Hope that helps understand where the doctor might be coming from. I hope that you and your Dr. are able to find some answers from your MRI.
Thanks for the input and I can understand what you are saying. However, most of the time when doctors see that I have bipolar they quickly dismiss me and that is very frustrating. Yes, I gave him a list of symptoms but I also told him that I knew they weren't all things that were neurological but I wanted him to have the big picture. We discussed only a few symptoms which were the major ones and the ones that are neurological in nature. I truly hope I don't have MS but I can't ignore it when it should have been ruled out and wasn't. Also my new rheumy did tell me to see a neuro to be examined and have tests done.
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Old 12-01-2011, 12:29 AM #15
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Another 2 cents worth! As expensive as MRIs are I don't think he would have ordered and MRI if there wasn't some flicker of wonder and doubt in his mind that it could be MS. MS is usually a disease where you rule everything else out.
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Old 12-01-2011, 04:10 PM #16
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your rheumy sounds like a good dr.
tell him what this neuro said. i hate when drs label things as psychological.
maybe you could get him to give you another neuro referral for a 2nd opinion.
any way you could omit the bipolar, at least initially? sneaky i know but you might get another slant on things.

on the other hand the dr will be mad, i take this advice back.
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Old 12-01-2011, 05:49 PM #17
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your rheumy sounds like a good dr.
tell him what this neuro said. i hate when drs label things as psychological.
maybe you could get him to give you another neuro referral for a 2nd opinion.
any way you could omit the bipolar, at least initially? sneaky i know but you might get another slant on things.

on the other hand the dr will be mad, i take this advice back.
I won't leave out the bipolar thing cus I would have to not tell the doctor I am on three meds I am on and I would hate to be prescribed something and have some reaction. Even if it hurts me in finding a good doctor that will listen I believe in full disclosure with my doctors, even the stuff they don't want to hear.
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Old 12-01-2011, 08:40 PM #18
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Hang in there HOH...
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Old 12-02-2011, 02:48 PM #19
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Hello..
In the past I have been upset with Dr.s because I thought they should know what is wrong with me. It took me awhile to realize the Dr.s are professionals and they know their work, but they area not able to "see" everything. We go to the Dr. and expect them to know exactly what is going on with us, heck, it takes more than one visit and the Dr. has to have more information. They commonly rule diagnosis out to get to the real problem. If you are not satisfied with the results you are getting see another Dr.. It may take several Dr.s before you get the answers you need.

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Originally Posted by TXBatman View Post
Please note that none of the following is meant to question the reality of anybody's symptoms...just trying to provide a little bit different perspective.

First, when a doctor says a symptom might be "psychological", he isn't necessarily saying it isn't "real" or that a person is lying. He is saying that it might not have a physical cause that he can find in a test or examination. Stress and other mental factors can easily cause physical responses or apparent physical responses, and calling them "psychological" is not an insult, it is a literal term for how the doctor perceives their cause.

Second, not to go too far in defense of doctors, but they do often have to deal with patients for whom it really is all in their head. My mother in law is absolutely convinced that she has two broken legs, multiple different kinds of cancer, AIDS, myasthenia gravis, ulcers, has had multiple heart attacks, and people are trying to poison her by putting cement in her food. What she actually has is arthritis in her ankles, type II diabetes, and paranoid schizophrenia. Unfortunately, every time she dreams up a new disease that she believes she has, the doctors have to take her complaints seriously and do a workup for it.

Where I think this comes around to bite folks with MS trying to get Dxed is that there are such a huge wide variety of possible MS symptoms, that we can sometimes tend to believe that everything we feel might be an MS symptom. While it is good to be diligent about recording possible symptoms, it is also good to acknowledge other possible causes for those symptoms.

If you go to a doctor with a list of 30 different symptoms, their very first thought is going to be that you are a hypochondriac that is disease shopping. I don't say that to knock anybody who truly suffers from alot of symptoms...I say it because doctors are trained to look for the most likely scenario and then to work from there. Anybody who comes in and attributes every possible ailment to a single cause is somebody who is going to trigger that kind of response in a doctor.

If you have never been to a hypochondriac forum online, go take a look some time. There is a huge fixation on things like MS and cancer, and many of them are convinced they have one or both, and can rattle off a huge list of their symptoms. Again, not a knock on anybody here...just saying that doctors see those folks too and have to try to decide with each patient, what is real and what is not. With a disease like MS, where there is often little in the way of physical evidence for our disease, and the symptoms are often fleeting and hard to measure or test, it can be very dificult for them to sort the wheat from the chaff and determine where to start with testing. An MRI is a good start, and a sign your doctor is not completely blowing you off.

My opinion has always been that people who think they might have MS are better off describing maybe 3-5 of their "worst" symptoms or the ones that most impair their daily life, and then saying "here is a list of other things I am encountering, but I really don't know if they are related or not." That gives a doctor a much more limited set of things to look at. They can test for evidence of other things that could cause the "main symptoms" and then use the other list as possible corroboration of what they think it might be. In the end, doing it that way might help lead the doctor through the process of elimination that is an MS dx, without first starting with the question of whether they are dealing with a hypochondriac.

Hope that helps understand where the doctor might be coming from. I hope that you and your Dr. are able to find some answers from your MRI.
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