Last reply 1 week ago
Disappointed with new Dr

So, When I was diagnosed 2 years ago, the neurologist kept trying to push anti-depressants on me right away, saying “everyone that’s newly diagnosed gets depressed”. I hated that attitude so I switched Drs. I thought the new one was great, but after a year, she started only “ seeing” patients via video chat…even after I had a new lesion appear and she switched me to Tysabri. Then she suddenly decided not to be a neurologist anymore. She literally emailed me my record, with no MRIs, and said good luck. I lost my insurance at the same time and moved. I haven’t had Tysabri since April and I’m pretty sure I had a massive relapse while off it. I finally saw the new neurologist (the only one close that insurance covers) today, and I fear this one is gong to be a mess as well! She straight up told me she doesn’t know much beyond basic MS care because she specializes in epilepsy. I’m so frustrated…Having this is hard enoug and we aren’t supposed to stress, but most of my stress has come from the damn Drs! I can’t win. I feel as though no treatment and Drs would be better for my mental health.

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sherryak
1 week ago

Wow. You’re having a great time with doctors. When I was first diagnosed, I was at the hospital & he was the neurologist that was on call. He moved to a higher-up position & pretty much dropped me as a patient. After he dropped me, I learned that his specialty was with sleep apnea & Narcolepsy. I lucked out & ended up with a doctor that specializes in MS. My doctor now has an office at an MS clinic & evaluates me every 12 months to be sure there’s nothing that I need to work on with the Physical Therapist or OT. My care now is so much better. Don’t get too discouraged; I hope you end up where you need to be too. {{{hugs}}}


mlgilber1
1 week ago

Omg I’m so sorry you’re going through this! It’s super frustrating and stressful trying to find good doctors and ones that actually care. I agree with you on antidepressants. They aren’t for everyone. I’ve had doctors try to push them on me when I was first diagnosed and they make me worse. My first neuro did the basic tests and told me it was just anxiety. Two days later I end up in the ER where I was diagnosed. My first neuro said he doesn’t even treat MS, but luckily the ER doctor had her own practice and accepted my insurance. She was great, I really loved her, but after just a month I suffered another bad relapse that landed me in the ER again. I couldn’t feel or move my leg! She said it appears that mine is pretty aggressive which she didn’t have much experience with that. She immediately put a referral into Barrow Neurological Institute which thankfully I’m covered there. It takes them up to a month just to input people’s referrals because they have so many. Thankfully the guy on the phone was super nice, found mine in a stack of papers, but they were booked till October and this was a couple months ago. He put me on a wait list and my neuro was willing to go ahead with treatment because she didn’t want me to wait. Thankfully the guy called back within a couple days saying they took on a new neuro who also specialized in ms and they could get me in the next day. I see him now and I now have a ms nurse there as well. Also, they have an infusion center so I go there for pretty much everything. I considered myself very lucky that my diagnosis didn’t take longer and that I’ve found great doctors. Hang in there, I know you will. It is super important to find one that specializes in ms. I wish you the best of luck and please keep us posted! I hope things start to go well for you!


stumbler
1 week ago

@marajade , hopefully some of our American members in your locality can provide advice on MS expertise in your area.

Have you tried the local chapter of the MS Society for advice?


mlgilber1
1 week ago

I know the issue is finding a ms specialist that is covered by your insurance, but your past neurologists should be able to refer you to one that does. It is their job to refer you if they can no longer treat you whether it’s due to retirement or they feel that they can no longer help you. They also know what insurances the different specialist take and usually are partnered with ones that accept the same insurance that they took. Also, I know most insurances here require a referral for a specialist. Have you asked your neurologist? Mine referred me to a specialist since she felt like she could no longer treat me. Also, emailing records rather than giving the originals is unprofessional and not sending the images. I’d request them, they’re yours and future doctors will need them and your doctor knows that. I hope you find someone soon! I know here in AZ it can take months to see a specialist unfortunately and you’ll need your infusion. Best wishes!


marajade
1 week ago

@mlgilber1…thank you for your support. I agree the old neurologist was very unprofessional. Not much I can do. She did tell me another possible neurologist to go to but I had plans to move moving to Virginia 2 months later, so I was in a hard situation. It would have taken that long to get into an office, plus I lost my insurance. She has closed up shop and no longer answers her phone. Very annoying


mlgilber1
1 week ago

@marajade I’m so sorry! It does take forever to get into an office usually which sucks. I hope you have a good move and find an awesome doctor there. If you had your images taken at a hospital or imaging center you can call them and they’ll make you copies. I think I’m going to always request a copy for myself from now on for my own personal records because it is a pain having to get the copies later when you actually need them. I finally found a new primary and he told me it’s important to have all my own records from now on to take to all my other doctors. He said he’d always give me copies of all the paperwork from now on. It’s a pain getting them from one doctor to another. I wish I lived in the same state so I could recommend one. I know you’ll find one and hopefully you can get in fast. I wish you well! Try to not stress. Best wishes!

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