My first neuro appt
 

Well please forgive me if I have posted this in the wrong area. I had my first appt with a neuro last Thursday because my rheumy felt that I had many symptoms that were neurological and questioned neuropathy and/or MS. Well I wrote down all my symptoms and conditions even if not neuro related and took them with me...I had 50 total (nice long list for a 29 year old). The doctor talks to me a few minutes and then does the physical exam.

Afterward he tells me that everything seems normal. He believes me that I have the symptoms but thinks its psychological!! So in other words he doesn't believe me...He said he would do MRI because I have never had one but that he thinks it will be normal. Yes I have bipolar and fibromyalgia but that doesn't mean everything I ever complain of can be said its in my head!! What is with these doctors?!?! I get so frustrated...Anyway thanks for listening to my vent. I have been down since my appt and not really sure what I will do next. Guess wait for MRI results.

This same post is in The Stumble Inn, too. I copied it over here to the MS forum because I thought it might get more views and replies if it were here, too. :)

http://neurotalk.psychcentral.com/thread160725.html

Hi hope :). I got the 'it's all in your head' diagnosis too. About 15 years later I got the real diagnosis. Good luck, hon.:hug:

Hi there

Nce to meet you. When you go to a doc and feel that you are not believed it is a horrible experience - and it makes you doubt yourself. I had lots and lots of little things that I mentioned to doctors before I was diagnosed, and they looked at me with that 'yeah sure' look in their eyes.

So I gave up after the first couple of times, because I was starting to believe that I really was a hypochondriac. Guess I got the last laugh though, because when I had my first 'major' relapse, it was undeniably obvious, and the MRI totally confirmed that I not only had MS, but that I had dozens of lesions - and some of them for a long time before this attack.

I hope for your sake that this is something else, but if not, and it is MS, welcome and stick around this is a really lovely and supportive group.

Regards

Lyn

I honestly cannot remember what my exact symptoms were when I went to a neurologist a few years ago. Tingling in hand, or tingling on face? Tingling on head maybe. I can't remember WHEN it was either, but I did go to one, because I was worried about MS, and after a short exam and some questions, was told that everything was normal, that it was probably caused by my fibromyalgia. I have been told MANY times that things are probably my fibromyalgia. The result is I haven't gone to a different neurologist. Every time I have felt burning or tingling, I think it's my fibromyalgia. Well, now I have peripheral neuropathy that has spread in 4 months from a toe to include both my entire feet, some of the ankles, shoulders, face and hands. I wish the doctors hadn't been so quick to tell me it's just fibromyalgia.

I will be going to a new neurologist end of December. I am worried about the cost, I don't have real insurance. I have already spent a ton trying to get doctors to believe I have a hormonal issue. Nobody took me seriously, not even an endocrinologist, so I went to an anti-aging doc. Yes, I have hormonal issues too, it just took getting someone to run the right tests. People think I'm crazy because they can't SEE that I'm sick. My foot problem was originally diagnosed as ingrown toenails!

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.

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.

I have fibro also...and many of my symptoms were attributed to it. It took me at least 3 years after my first real MS symptom (numb toes) before I was put on MS meds...
Keep a symptom journal with dates of onset & dissipation of symptoms so when you do see a doc you have documentation.
It is also wise to keep a daily log of how you are feeling, just for your records. Not to focus on illness, but so that you see how you are doing. Record also when you feel good!!

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.

Hi HOH and welcome. I really hope it will turn out you don't need to be here, but in the meantime make yourself at home. There are alot of friendly people here with lots of knowledge they're happy to share! I'm another MS and Fibro person. :eek::eek::eek: That MS pain is a burning, stabbing nerve pain and the fibro seems more like the flu....to me anyway. Good luck, hang in there and stick around for awhile!:hug:

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...

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!

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.

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.

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.

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.

Hang in there HOH...:hug::hug::hug:

Your Right
 

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.

Feel well everyone.