Need feedback on going back to MS Neuro or not

[mjan]

Just learned from my PCP that my former MS neuro was switching over to the healthcare corp I am in now. AND he'll be practicing at the hospital I live only 7 mins from.

Now this is the neuro who monitored me for 4 years believe I "may" have a mild/benign case of MS; also told me he NEVER rules out MS. WELL.. until I Had to change insurance as now I was working for this other healthcare corp in 2008. At THAT closing appt he told me NO, you do not have MS. His PA John had been telling me that I never had MS but definitely have something going on neurologically.

Now the present MS doc I am seeing is double the copay but I only see her annually, and told me she works for ME< as I am the boss of my treatment. She is very nice, personable and takes time. But SHE was the 3rd MD who believed I indeed have MS and was my 2nd opinion.

The former MS neuro is very nice but his practice was way too busy. HE also kept saying my neuro exams were normal, though my balance, coordination and cognition suffered.

I just don't know if I want to return to him after he told me I do not have MS. I have new lesions since he saw me that were Dawson fingers MS type. But still...

I am thinking of seeing him for HIS opinion now and go from there.. But.. want YOUR feedback..should I continue with him after he had UNdx me? HE's a renowned speaker/reseracher for MS in midwest area. But I feel so torn now..

Jan

[0485c10]

I saw your other post on the subject and i agree with you its a dilema. i also agreed with your idea to go back once and get his opinion in the face of 3 other docs who do believe its MS...and ask what other neurological illness it could be as John had implied. i thought no other ideas to contribute...then i thought do you have your medical records, which might help you make a decision too.

are you using a dmd? saving money is always desirable but perhaps not so much if you risk getting treatment?

[freedom1]

Jan,

You have to do what makes you most comfortable. If you are happy with the doc you see now and since you only see her once a year the copay isn't really an obstacle.

From my own experience I can tell you that if a doc doesn't truly believe you have the illness then the treatment usually is not what it should be.(and in my case never) I had been diagnosed with multiple autoimmunes but no one ever truly believed I had any of them. Therefore none of my complaints were ever taken seriously.

Finally I was diagnosed with MS after having ON and MRI's that turned up lesions in spinal cord only. My doc left the area and the one who took her place is now telling me he is not sure that I have MS because of the lack of brain lesions. I only have 3 on MRI, however I do have several large lesions in the spinal cord. While he is thinking I have NMO/Devic's I am running as fast as I can to another neuro.

If I have NMO so be it but after my last appointment and the thought of it being NMO he told me to contact him with any changes immediately. "NMO is nothing to fool around with." Well I did that 3 times with no response so I figure he doesn't take me seriously either and it is time to move on.

Funny, I was approved for LTD before my STD ran out and approved for SSDI on the first shot about 4 months later. I know that at least the LTD insurance co had doctors going over my files with a finetooth comb. They had no problem with the MS dx. Their exact words to me were "you will never get better or be able to work".

Do what makes you comfortable, it's your body, your health and your life.

[KatieDidNOT]

Coming from a family of medical professionals (and I mean a lot of them, unfortunately no neuros), I can attest first hand that doctors make mistakes. But I would also like to point out, neuros are the “cream of the crop” of all docs, in my opinion…most are just brilliant.

My first neuro told me I had a demylinating disease. She did not know which, but thought it could be ALS (Lou Gehrig’s Disease). Boy, did that cause all sorts of issues and many family members became involved and “converged” on Northern California where I was living at the time to get things straightened out. My neuro became concerned when I brought everyone to my next appointment. She changed the diagnosis to MS. I was still so upset because that wasn’t good either. But somehow, I ended up at UCSF Multiple Sclerosis Center and got a Dx of “Possible MS”, probably benign.

Never again did I go back to that first neuro (she was not so brilliant), but I probably have seen 4 or 5 more MS specialists since that time (some of the best in the Country)…and yes, they all said I had MS, and they all said it with certainty even though I had a negative LP. Of course not the answers I wanted to hear…but….it is what it is I guess.

So Bottomline (and my opinion only), I dislike wishy-washy docs, but MS is a disease that is very hard to diagnose…it can take years. But MS Specialists do not just randomly hand out a diagnosis of MS…they are pretty certain, meticulous and have ruled out everything else. If I had a doctor that said, hey you have MS and then said no you don’t and got all wishy-washy on me….that would be it. Don’t care who it is.

MS is a disease you don’t play around with. You have your other doctors opinions…I personally would stick with that…especially if you are on a DMD. Sounds like you have one good MS Specialist already.

Another option is to have two. I have a local regular neuro, who handles emergencies and my MS Specialist (an hour away) who I see twice a year. My MS Specialist always trumps my neuro…no matter what.

Best of luck in your decision, do what you feel comfortable--Katie