Wow, thank you. What a horrible experience. I hate that they dismissed your telling of the symptoms having been long lasting. Did he have an MRI before he told you you were "too old" to have MS? Was your scan clean?

I am going into a clinic on Tuesday. I got her name from the National MS site. The notes said that 80% of her patients are/were diagnosed with RRMS and she has a good rating from her patients.

For me this round of symptoms,the second time I've had the same type of symptoms, just worse this time around. The first time was about 4.5 yrs ago. The neuro I saw that time said that the symptoms fit, but because my MRI came back clean he wouldn't make the dx. He said that if these symptoms returned to come back.

It's just frustrating. These people that we go see we are suppose to trust. Trust that they will listen to us, make appropriate diagnosis, and look at everything thing, not just what they feel like at the time, rushing through patients because THEY are running late and want to get home earlier.

kristen8283, I just registered as a member to this web site just a few minutes ago. I know what your going through, it's called "medical hell". It took about 6 years for me to be diagnosed and I was just diagnosed last October. I'm so tired of incompetent doctors. they did one non-contrasting MRI on my brain with a very weak MRI and from that result declared that I absolutely did not have MS and never looked in that direction again. I had to do all my own research and demand the tests that I thought I needed. Finally I got a contrasting MRI of my spine and low and behold that is where my lesions are. I've got 2 very small lesions on my brain that could not be detected on a non-contrasting MRI, my lesions are on my spine. I finally found a MS specialist that found it, he did contrasting and non-contrasting of my brain and spine. He is the Dr. that finally found it. He said he had heard many stories just like mine. I thought I was loosing my mind! I'm dealing with anger issues right now, but it's not because of having MS, it's about how I've been treated, not only by the medical community but also by my friends. I used to run 2 miles every morning until the weakness, balance and fatigue overcame me, I was very fit and healthy, a size 6. Then of course I gained weight and a friend told me that the only thing wrong with me was that I was just getting older and possibly going through menopause and that I was just going to have accept that I wasn't going to be slim and pretty all my life. People said that I couldn't have MS because I was too old. The last four years have been so hard, there is no support group in our area and I'm angry. Again I'm not angry about having MS as a matter of fact I felt victorious when I found out that I did indeed have MS. I had done so much research on so many different diseases and it always came back to MS. It's been the treatment from some friends and my spouse that has caused this anger, I wasn't able to even say MS in my home or around some friends, so I just kept my mouth shut.
Keep searching for answers, find a Dr. somewhere that will listen to you. I did and it's really paid off. Thanks for letting me vent.

I got the printout of my appointment with this guy. His offical diagnosis? Malingering and Somatoform. Basically that diagnosis fits ALL people with fibromyalgia and that pesky vulvar vestibulitis (with abnormal nerve growth that I have) that's all in my head.

It's amazing how well trained a dr. he was; he got all that in a 10 min conversation with me

Yep, all in my head. I want to be like this. Guess the little remission I had after the breast reduction, I felt like I needed more attention, I obviously didn't like the fact I could: return to work, have my own money, be able to go camping with my horse and spend 3 days sleeping on the ground and riding 40+ miles, work my horse, teach lessons, hang out with my friends, go dancing, sleep without scary monster dreams. . .yeah, not enough attention. So instead I want to have to plan to leave the house, not drive, forget crap in class so I am getting a D in English, can't ride my horse without assistance, have monster dreams, hand shakes,. . .yeeeaaahhh, that's what I want.

to quote Charlie Brown . . . ARGGGGGGGGGGGGG!!!!!!!!!!!!!!

I love doctors

wow, that's amazing. I'm not sure if I have your guts. I am seeing another doctor (out of pocket) tomorrow and am not sure if I should ask if that is how they should do my MRI. How do you bring that up without the doctor getting mad? The neuro I saw made his dx in the first minute, in my opinion, that it's all in my head.

Hi regigirl,
Welcome to the forum. Thanks for joining in. Nice to meet you.

Artiemouse I love your dog. Beautiful.

Hi again kristen 8283. Anything new going on with you"

Anyway, it's a common problem many people face like you and artiemouse have found out. If all the ducks are not in a row, then it must be something else, they say. Or they make you think it's all in your head.

Many times friends and family, including the spouse, may not believe it either. They rather not talk about illness. They don't want you to be sick so they don't want to hear about it.

I still have people in my family that don't want to hear about my MS 29+ years later. They may call me and never ask how are you feeling? If I mention I have this or that today, they change the subject. People can be strange. If you look well, take care of yourself, and dress nice, then they think you are okay.

They don't know how you are feeling, and probably don't want to know. If the dr confirms no MS (at this time) then they think you are making it up.

I was diagnosed after being in a hospital for a week getting all kinds of tests. No MRIs back then. I was diagnosed by clinical exam, LP, and VEP. Many other rule out tests all week and Grand Rounds for odd tremors.

Years later I had my first MRI when they came out, in an open machine, with very low strength to the machine (the Telsa) and no GAD dye. It showed nothing, no lesions so they said the brain is clear and the spine looked good. Still I had my diagnosis, with a clear MRI at that time. I didn't know they would not show up in an open one.

My MS Specialist ordered new MRI's. In a closed machine with a higher Telsa with /and without GAD. I had many lesions that showed in my brain and in the right places. I had to get this test to be put on the DMD's or my ins company would not pay for the Injectables.

So in my case I was dx'd with MS without any MRI at all.

The guy who told me I was "too old" had a copy of my MRI in front of him with 12 lesions on it. A long history on paper of sx and issues. He was dimissive and rude. After talking to many other of his patients, I have decided that its just "HIM" it wasnt me.

Years ago after having headaches, dropped foot, and optic neuritis the MRI according to my MD shows "WNL" or within normal limits. I was given an anxiety lecture, and told to go home, with a bottle of Xanax. I was sent to see someone about migraines, who told me my headaches didnt fit the normal pattern of migraines, and he felt that I was "malingering" another good term.

After taking a full retirement and moving to the back woods of hickville. I saw a local MD who said "WAIT!" he did a massive exam, including calling for my old films, which clearly showed lesions, and sx way back when, and insisted that I get into the big boy MRI, not the open one, have contrast, and a follow up. What a difference from being dismissed to being believed. I had long since given up on getting any proper attention, and had even convinced myself that i was just "high strung"

Its all in your head...yep, most MS is.

Hey I hope I'm doing this right. I'm responding to your question about making your Dr mad. I guess I did make him mad, but you have to remember your Dr. is YOUR employee, you pay him. You're not a good boss if you permit incompetency in your workplace, much less in your life and health. He told me I needed to stay off the internet, it was putting ideas in my head. I told him he needed to get into his profession and do some research like I have done so that he and I could have an intelligent conversation. This doctor was my family Dr. not a specialist, He would tell me there are a lot of illnesses that have similar symptoms like MS so I asked him to name them and set up the tests for them. He couldn't name any except for lymes disease which had already been eliminated. When I rattled off 6-8 diseases that could possibly mimic MS he was speechless. He looked like a deer in headlights. I asked him "you don't know any of those diseases do you?" He just laughed, that's when he said I needed to stay off the internet. I told him I was a very intelligent woman and he needed to do some research so the next time I came to his office we could have an intelligent discussion about my symptoms and diagnosis. I saw him a few more times because I needed his referrals, but from then on I told him what I needed him to do as far as specialist and referrals. Dr's are not Gods they are just people and sometimes not very intelligent people.

Artie - I'm so sorry you saw such an a$$hole. Sorry about my language - but as a medical practitioner myself (mental health) - malingering is just one of the most malicious things that you can diagnose, in my opinion.

I wish you luck with the new doctor. And as far as the MRI, it is perfectly fine to ask for an MRI with and without contrast. There is nothing wrong with a patient being educated!!

~Keri

Thank you, over 10 yrs ago I was diagnosised with Fibro and soon after I had to switch providers. My next GP told me that there was no such thing as Fibro and to just get over it and push through everything.

I guess there are times that I wonder, nothing shows up on my tests (bloodwork), they all say I'm healthy...sometimes I wonder what is going on. Am I unbalanced? I find it very hurtful that he said that. I don't like the life I am living, I don't like that I can no longer ride, hike, camp, do what I want, I don't want to be sick...

And what does a neuro know about psychology? let alone after a short visit.

I think what set him off is that I brought George (service dog in training) and that on the way to arranging everyone in the small space, George sniffed him. Maybe it was that I had a list of things that has been happening over the last 5 months. He snapped when I questioned him. . .I don't know. . .

I found another neuro and went today, but didn't realized with my second insurance that I needed a referral from THEIR people to to use the insurance and that I couldn't pay out of pocket instead....weird...Hopefully I didn't leave a bad impression because of that.

well artie, good luck with new doctor, as I said I had seen a few neuros..

over 10 years, neuro that told me all sorts of things and that it is anxiety and I feel great when pregnant due to being happy then....(after just meeting me and knowing I lost a baby full term before having my last three kids... I have five kids...)

another neuro kept talking about headaches even though I do not have them... thinking migrane related.... but made no sense she then said NOT MS like I wondered and that to come back if I get any sx on this list she wrote to me... the list was MS sxs hmmm do you think I am dumb...

on and on...

I have had a neuro psych ask me after my memory testing being so terrible results, a physical Therapist I was sent to for muscle spasms after seeing how my balance and weakness on right side were, had a opthamologist after checking my right eye for problems due to blurring (no damage though) and two ENT about my dizzy/vertigo spells.... all of them ask me at one time or another... Have you been tested for MS.....

MRI tests I have had over the years are clear though... right now as I think I posted to you keeping the neuro I have... he helps with sx control... I guess.. and is keep digging mode... and when I can afford to he will send me to shapiro center or Mayo....


good luck, and hang tough, sarah