I had my Neuro appointment yesterday. He thinks I'm having an exacerbation and wants me to have another MRI of my brain and spine. I haven't had one in several years.

It will depend on how much Medicare will cover and what the Imaging Center will accept for me to schedule an appointment. MRI scans I've had in the past when I had good insurance were notoriously expensive.

I told my Neuro about the symptoms I've been having. I told him about the left leg weakness and the L-Hermitts episodes. I was mainly telling him so he could update my records. He asked if I had been having any unusual symptoms so I told him. After I got through he looked at me and said "so what do you expect me to do about it?" Not nicely, either. Said it like I was expecting him to perform some sort of miracle and heal me. He then said "you refuse to take any of the FDA approved treatments for MS so what do you expect me to do?".

Well, my own attitude took a nosedive 'bout that time. He does this every time I go in for my twice a year appointment.....but this time it was a little different. He was condescending and rude.

He asked if I was taking the Zanaflex for my spasticity symptoms and I told him I took it briefly but it made me so unsteady on my feet that I was afraid to take it too often because I'm alone 99.9% of the time and was scared I'd fall. He says "So don't take it. I prescribed it to help you but if you think it's doing more harm than good then don't take it." Of course he had to roll his eyes and sigh as though I were refusing to take the only known cure for MS. Ughh...........

I have to go twice a year because my LTD policy requires it. I was telling him what was going on so he could update my medical records. He knows I've taken Copaxone and Betaseron with bad side effects. I voiced my concern for the possible elevated liver enzymes and he blew that off. Said he had never known anybody to have that while on an Interferon.

At this point I just shut down. I agreed with everything he said from that point on and took the paperwork for my MRI. Don't know if I'll be getting one.....but I took the ppwk anyway. I'm just so sick and tired of his "superior" attitude and his condescending comments.

I need to find another Neuro.....preferably one that has MS and knows first hand what we experience. I know....good luck with that.

I personally have had a HUGE increase in liver enzymes while on Betaseron, and it was so high that I scared the nurse at the MS clinic. So, while HE may not know anyone who had it, YOU DO! I did not feel sick, and my liver healed quickly after the drug was removed. The liver can be 80% gone and still work effectively. it was scary, but I recovered. I too went onto Copaxone and felt HORRIBLE. I couldnt think, I was exhausted, my dents were getting bigger by the day, I had such mental confusion and psoriasis that went wild I chose to stop taking it.

There are two MDs in my neuro office. the first guy is a rude pig! When I was being dxd with MS he said "you are too old to have MS." and treated me like I was whining. When I complained of a pain in both legs, he went on to lecture me about how far that lesion would have to travel to affect both legs. I said "what if I have 2 lesions?" he didnt have an answer for that. I felt dismissed, and was treated like a whiner, even with a firm Dx in hand, he would speak over me and say "if it were MY office, we would NOT have dxd you with MS, but if they want to stretch the truth at Dartmouth to make you fit in their category, I will have to accept their findings.

The 2nd guy is nice, he listens, he is gentle, and when I say NO MORE! he says "that's your right." he went on to explain that while they would prefer that I was on a drug therapy, they understood why i had stopped. Clearly I cant take interferon, and if I felt so badly on copaxone, then it wasn't worth it.

Can you see a new neuro? are there any MS clinics near you? Medicare WILL pay for your MRI and the new neuro, and I know this because they pay for mine. So far I have refused their drugs, I refuse to do an MRI every six months, I refuse to take drugs that are so dangerous that the side effects are worse than the disease, and I will continue to be a stubborn, worried, proactive patient. With or without an MD that believes in me, or treats me like a whiny little cry baby.

Im sorry that yours is a nut job. its his job to SERVE your needs! Its NOT his job to make you feel worse about your situation. I would call a patient advocate if he is attached to a hospital, and would call a new neuro is he isnt.

Your concerns are valid and you deserve to have them taken seriously.

Aww Kitty,

I feel soo badly for you... it's hard enough dealing with MS let alone a neuro who is a jerk.. I would look for another one.. you don't deserve that treatment.

Hugs
Cindy

As I go back a re-read your post, it strikes me that the big problem is his attitude. I can understand a doctor being frustrated when a patient is (in his mind) refusing to cooperate with what he considers to be the correct treatment. But being rude and dismissive doesn't strike me as the way to handle it!!

It's a conundrum. We have the right to make decisions about our own health care. And yet, what's the point of having a doctor if we don't follow his/her advice?

If a doctor simply can't work with you when you're not ready to try new therapies, or decide to discontinue some, then I would think he'd tell YOU that you need to find a new doctor!

What's tricky about MS is...that it's tricky. This isn't a case of a doctor saying "You won't take the pain pills but you're complaining about having pain."

I hope you can find a neurologist who will work WITH you, even if he/she feels you're just treating your symptoms. We have a right to do that, also, I'd say.

I could almost understand his frustration if I simply refused to even try the DMD's. But I've tried two of them.....one being an Interferon.....and couldn't tolerate either. I felt worse on them than I did off them. And he knows this. I'm not sure if he was dealing with something happening in his own personal life or if he just decided to be a jerk about things but I'm going to start looking for a new doctor.

Kelly, does your LTD say that you must see a Neuro twice a year or just Your Doctor? I dropped my expensive, condecending, uncompassionate Neuro, when I stopped the DMDs and he wouldn't give me LDN.

I just see my reg Doctor now and I love him. I haven't bothered him with my LDN script, since I have Dr. Sullivan, but I think he would prescribe it if I asked him.

He's right, you don't need him or his Rattitude.

Hi Kitty, I don't have your condition, but I did experience a neruologist like that. Truely I couldn't deal with it, and at that point I gave up for a number of years and went to a pain specialist. When you are treated like that it sure hurts a persons feelings of self worth. That rolling of the eyes is very rude indeed. Let him experience what you are going through and maybe he wouldn't act that way. Go get a differnent doctor. Heck with that, you need some compassion along the way. I would get the MRI, if your insurance covers it. My medicare did cover two in a short amount of time. That record can always be brought with you to the next physician. Don't give up on finding a good doctor. I walked out of that office, where I was treated that way and told him to his face I would not be back. I didn't deserve to be treated like that any more than you did. No excuse for his behavior. I hope you can find some resolution as I did with my second Neurologist. I wish you all the best. ginnie

You have been given some good advice. I would also get a new neuro. My neuro always tells me about the new treatments on the market and asks if I am interested in pursuing them. But after my experiences with copaxone, betaseron, and tysabri, he seems almost relieved when I tell him that I am not willing to try anything else at this point. On the other hand, if my mri's showed increased activity I imagine he would also try to talk me into trying gylenia.

Oh yeah, had the old "what do you want ME to do about it?" question.
Find someone else. It's not worth the stress.
And yes, what Blessings said.

Finding a good doc is worth the time , be it GP, neuro, even chiro or phys therapist...

Some just have horrible attitudes and won't even listen to your point of view.
Many won't even consider any kind of alternative care options...
MDs seem to be programmed to rx a pill or do surgery and that's is it.