This Is MS Multiple Sclerosis Community: Knowledge & Support

Well, after nearly 7 years with my local neurologist, he called this morning and told me he thought it would be best if I started seeing the MS specialist 3 hrs away as my regular neurologist. He says he feels bad that I didn't take his advice last year and start Tysabri, and that I haven't had a recovery of my vision lost by optic neuritis last year (one eye).

He was nice and apologetic, and assured me that for emergencies he would be available (even as he mentioned other local neurologists!), but he definitely doesn't want to be my regular neuro anymore.

His main complaint seems to be that, after having no return of vision after an optic neuritis attack, I went to see a neuro-opthamalogist, and then, months later, the MS specialist. He seems to think I don't trust his judgment. However, I pointed out to him that Tysabri is a big deal and that I wasn't ready to go on it yet - it didn't have anything to do with him, it was me. He did say he would set me up on Tysabri now and get me started.

Has this happened to anyone else? I was really surprised that he dropped this on me. I realize I could stand my ground and insist that he keep seeing me, but I really don't want to go to him now.

Anyone know a good MS neuro in southeast AL?

I was dropped by a neurologist, as well. He told me that since I could make my own health decisions that I could do it on my own. Lots of doctors have dropped me. When given a drug to try I would say I wanted to do some research on it beforehand and that didn't sit well with them so I was dropped. Now, since I don't have health insurance I don't have to worry about hurting anyone's feelings. I get to make my own decisions and if I feel there is something worth pursuing it is paid for by me and it has to be worth the time and money. CCSVI is where I have decided to put my resources to. Now I just have to wait for someone who is able to do the testing and procedure that I can afford.

I went to see a new neuro for the first time the other week.
When he heard I was on LDN and had CCSVI treatment his words to me were: (and I quote) "I don't think we are going to get on, I have found that patients who do their own thing tend to continue to do their own thing so I am not the right neuro for you"

Sounds like one sensitive neuro you got there. Sorry to hear about the "break up", it's never happen to me before but maybe you'll find a better neuro in your area. And maybe you can just visit the MS Specialist once a year or so.

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October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)

I was also dumped by a neuro. He said, "You read a lot, you know a lot. You ask a lot of questions. I can't answer your questions. You should see an MS specialist. You can pick up a copy of your file on your way out."

obviously these dudes feel threatened by anyone who asks questions, or wants to explore all options. They're no loss...definitely not leaders in their field.

So different to my interventional radiologist. He explained the procedure, answered all my questions, said I was welcome to think about it before making a booking for a procedure, and let me know that I could cancel the procedure...even if I started having second thoughts during the procedure....it was no big deal. He could just back out of my vein - no problems. That's a doctor who's confident in his skills and the subject matter.

Hey guys, thanks for your responses. I'm sorry it has happened to you too. I always want to research new drugs and treatments, and seriously consider any changes. He also said that I was "smart and educated and seemed to prefer seeing a specialist" (paraphrased) which I took to mean he was tired of me asking him about treatments he was unfamiliar with (LDN and CCSVI) and not just doing what he suggests.

The thing that made it weird was that this seemed to come out of nowhere - we have had a very good relationship (I thought!) up to this point. Oh, well, a nurse I chatted with today recommended another neuro nearby and I might just give him a call. She told me to make sure to "interview" him and see if he was acceptable to me, not the other way around (LOL). The funny thing was, that when I told her I had been fired by my neurologist, she immediately guessed who it was! I guess he has a bit of a reputation for being a little strange - she told me he literally scared her the first time they met! I've always found him a bit eccentric but not scary.

hwebb - where are you located? I would love to find an interventional radiologist like yours!

Nothing more than massive egos.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Neurdos are good for headaches!

Go get a MS specialist!

A/C

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If you can't explain it simply, you don't understand it well enough. - Al Einstein

my neuro is kind of dismissive too. but my GP is great and works with me through all my weirdness

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

My EX also got offended if I didn't follow his advice ASAP, he forgets that I work in a hospital, so when he told me to go get a swallow study done, I was able to talk to the speech/language therapist and we did more a casual eval, so when I didn't have a 'report' for him I thought he was gonna stoke out. When I didn't add a drug for incontinence to my ever growing list, the same response. While he didn't fire me, he started to treat me in such a way that he knew I was gonna quit him.

For instance...he was interpreting the neuro psych eval with me, and I exprssed concern that the report indicated that there was a significant (28 point) drop in my pre morbid IQ.
His exact words were..."you were never that bright" WTF? Excuse me?

I'm still bright enough to know to get away from him as quickly as possible...

AND my 'social IQ' is WAY higher than his.....

They are a breed of ego rare even among docs...you're better off...they work for us and with us ideally..

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Be kinder than necessary, for everyone you meet is fighting some kind of battle..

Kathryn,

I'm sorry that this happened to you. However, there are some things that you should know (I previously worked in healthcare risk management - so I have seen this before).

Firstly, you're doctor can't immediately terminate his relationship with you. He needs to do so in writing, preferably by certified mail. He needs to offer to treat you for a 30-day period while you seek an alternative health care provider. In addition, he should offer you the resources to find another provider (e.g., list of local providers, numbers to physician referral services, etc.) as well as offer to forward your records to the new provider when you have chosen one. Failure to do this constitutes patient abandonment on his part.

I wish you the best of luck in finding a new provider.

I think this bunch got on the "I'm smarter than anybody" line twice. I've never been fired by them but I have fired at least two on my own. The very smart, compassionate young man who diagnosed me left the practice to go out on his own [too far away now] He was a wonderful, extremely intelligent, non MS specialist who knew not only much about this disease but was so very skilled in interpersonal relationships. Just a nice guy. Sad to see him go. The second neuro was an MS specialist who was absolutely in absentia when I tried to call him during a severe drug reaction from a med HE put me on. I furiously let him know how unacceptable THAT was. This man considered himself an MS specialist. By his own admission he knew "not enough" about the disease to answer some of my questions. The next beauty was a female.(I mistakenly thought that would influence how she handled things...Hah) When she told me to stop complaining because, "You're sill standing..You should see what I have to deal with." Bye, Bye to her.
Then, I was questioned,"OH, you're an AMD [that's almost doctor]?" when I asked "too many questions" or made a suggestion . A Dios. T
This guy [ present neuro ] has actually asked ME to do research on something I asked about and let him know......I've stayed with him because of his nurse..She has stayed neutral when I signed up for a clinical trial, found a neuro to give me botox and now with CCSVI. I sent her a packet of info to give to the MD since he was presenting the hypothesis at grand rounds...she was headed for a symposium on CCSVI..This group is much more open minded.
When I'm liberated I will visit every one of them and be a little "in your face". Can't wait.. I don't intend to see any of them til then.
Good Luck to all...................................

When my PCP first sent me to a Neurologist, I told her that I would like one that will listen to me AND appreciate the fact that I WILL NOT jump on taking drugs and that I will always do my research first, way the options, look for CAM, etc. Her response: Good luck with that, I have yet to find a Neuro that doesn't realize that he is NOT a god.

I did see the first Neuro, who suspected MS and then sent me for NUMEROUS other tests which brought him closer to the diagnosis. I must give him credit, however, because he suggested that I see another Neuro who specializes in MS for my own good. It started out that he just wanted a second opinion, but when the MS opinion was shared he told me that it would be in my best interest to see the MS specialist and that he would be doing me a great disservice if he did not make that suggestion.

Now, I see the MS specialist. My concern was/is that Neuros who specialize in MS might have blinders on to other issues. In addition, this MS Specialist runs an MS center. We all know that much of the funding for these types of centers comes from the Pharmaceutical companies that make the MS drugs. When I met with him, I did share with him that I am very cautious, and will continue to be cautious, about any drugs that I take. So far, he seems to accept that. As a matter of fact, he has even made jokes at my follow up visits when he asks how a certain med (for symptoms) is working for me. He says 'Let me guess, you didn't take it because you were concerned about one of the side effects'.

My last visit with him did no go well, however, from my husband's perspective. It was the very first visit for my husband and he had alot of questions. My guess is that the doctor was frustrated that all of a sudden my husband was asking oodles of questions. My husband asked about Lyme and asked if I had an ELISA or Western Blot. The Neuro rolled his eyes. So -- that didn't go over well. Our follow up was to call my PCP and request a Western Blot by Igenix, and the PCP is currently trying to make that happen.

SO....very long story short, WE WILL SEE what happens once the Neuro finds out that I went to my PCP for a second Lyme Test.

Last time I was in to see my neuro, he and I did not agree on a couple issuses. I told him as far as I could see the difference between our educations is only cost. I said you probably paid 6 figures for your education and all I paid was $2500 for my computer and attachments for the same education. Needless to say, I don't think he will be asking me to come back to see him. I left before he could comment. But that is alright because my GP will just ask me what I said this time, shake his head and refer me to someone else.

DX/2008 PPMS