How to pick & approach doctor?

[kayc3115]

I am lost and confused and at a complete loss.

I have been worried for about 3 years that I might have MS. My aunt does and I've talked to her about it as well as my symptoms and all she does is encourage me to go to the chiropractor.

For the last 5 years ever since I noticed part of one of my finger was numb...it stayed that way for about a week...I've tried to pay particular attention to my body. I've lost nearly 100 pounds (90-95 depending on the day) and I get regular exercise. Yet I've still got all these...odd...things going on with my body.

I came across a website nationalmssociety talking about what we now about symptoms (can't post the link - sorry) and I've found that in one form or another I have almost all of those symptoms listed.

I could really get into it, and go off on all the different things affecting me and how long it’s been going on, but at this point my biggest question is how in the world do I pick a doctor? I’m to the point that I need to know one way or another what’s going on with my body.

I’ve got insurance, but how do I just pick a name on a list? How do I approach a doctor and say that I think I may be suffering from MS without sounding crazy? I don’t want pills, especially not pain pills (I’m allergic) I just want to know if this is truly what I’m dealing with so that my lifestyle can adjust.

Someone please help me…is there someone in my same area (Boise, ID) that has experience with local doctors and can tell me who is great and perhaps who to avoid?

Truly any and all advice would be greatly appreciated.

[aitch10]

Just find a reputable neurologist. That's what I'd recommend.

My DX was precipitated by thinking I had a pinched nerve, seeing an orthopedist, him saying my spine was 'structurally fine' and sending me to a neuro.

A LP and MRI's got me DX'd pretty quickly after that.

[MSer102]

First, congratulations on losing almost 100 pounds! That took incredible dedication and it will help you in the long run no matter your diagnosis turns out to be.

Next, you can google "multiple sclerosis centers in Idaho" to at least narrow down the possibilities for a neurologist who has experience with MS. Then you can cross check to see if any of the centers or doctors take your insurance.

The National Multiple Sclerosis Society has lists of names of neurologists across the US who are known to be experienced with MS. They don't actually recommend any doctors but it's better than just picking a name of a general neurologist off a list.

The NMSS website (www.nmss.org) says that the NMSS has a local office in Boise with phone # 800-344-4867. You can call them to ask for their list of names of local neurologists who are experienced with MS. Then you can cross check with your insurance list. It might not be a big office and is probably staffed by volunteers so you might have to give them some time to reply. If they can't help, you can try calling or emailing the national office.

You might also try posting in MS forums under a thread title like Looking for Neuro in Boise, ID.

Your PCP and ophthalmologist (if you have one) also might be able to recommend a neurologist that has experience with MS.

[KatieAgain]

I would echo part of what MSer 102 said. Go to your Primary Care Provider and ask for a referral to a Neuro. At this point there is no need for you to do all the research...let your PCP do that.

You simply tell your PCP that you have a family member with MS and you are starting to exhibit some symptoms, you are troubled by it and would like to be checked out by a Neuro.

[MSW1963]

I recommend seeing a Multiple Sclerosis Specialist Neuro. If it's possible to sellect a MS Specialist Neuro with a reputation for outstanding diagnostic abilities in your area, that's additional criteria to consider.

Some doc's are put off by a patient they feel is fixated on a particular disease/dx. To avoid giving that impression, communicate with MDs in terms of wanting to 'rule out' the possibility of MS, based on the similarities of your sx's with MS and having a family member with MS.

If you do have MS, it may nevertheless be a difficult journey to diagnosis. I had a referral to the MS guru in my area, Chairman of the board for the NMSS, trained in Italy, etc. He refused to dx, despite my medical history, and too many to count brain lesions on MRI. According to the MS guru, my clinical neuro exam was 'unremarkable'. I believe he thought I had a remission/recovery in my future. That was not the case. I did see another MS specialist very shortly after, and was dx'd. Trust your instincts, if a doc is condescending, disrespectful or dismissive, it's probably time to see a new doc.

The timing of an MS dx is sometimes a 'crapshoot', a matter of sx's lining up with abnormal clinical exams, abnormal labs/MRIs, the right MS doc, at the right time. Eventually it all comes together in order for a dx to be made, if it's MS or something else.

Abnormal MRIs alone, without a definate dx, will typically result in becoming uninsurable. Have your insurance and financial affairs in order before persuing a dx or testing.

Best of luck to you.

[onlyairfare]

I'd agree with the suggestion to ask your primary care doctor for suggestions for a neurologist for you to consult. And I'd be cautious about focusing in on MS. It has many mimics and you don't want to overlook the possibility of another diagnosis with some similar symptoms that needs a different treatment

[22cyclist]

My husband is a physician, and he always says that word of mouth is the best way to find a good physician, so the idea of placing your question on the boards is a good one. Someone might have had good experiences with one or two neuros in your area. He also says the best way to communicate is just to be honest and be sure to tell them all of your problems. If they cut you short, they are not the dr. for you. Your first evaluation with a neurologist should be at least an hour. You should get a thorough examination, be able to talk with the physician about your symptoms, etc. You can ask for an MS specialist in your area, or a general neuro. I believe I would ask for an MS specialist. They can rule out the mimics, and send you to a general neurologist if they feel you do not have MS, or whatever specialist they feel is best for you.

Good luck

Lisa
Moderation Team

[kayc3115]

"My husband is a physician, and he always says that word of mouth is the best way to find a good physician"

I had to read this several times because each time I kept seeing that you said your husband was a physician in Boise. Not sure why I kept seeing that but it took a few times stepping away and coming back in order for me to read it correctly.

Thank you for the replies and encouragement. I was hoping to get some recommendations of good PCP's in the area as I don't even have that and I'm having a lot of trouble just picking a name off a list of approved providers for my insurance.

Symptoms definitely increase dramatically when I'm stressed and it's happening more and more often now.

[bwmorris]

kayc3115, before I see a doctor, I tend to put the name in a search engine and see what comes up. Often, there's a site or two that list the doctor, and, also often, they have a place where patients can rate the doctor.

I can't say all of my visits have been consistent with other patients' ratings on such websites, but I'm guessing you're like me and prefer some info to none. This might help you narrow down a list, either by star ratings, which aren't that helpful in my experience (unless there are BIG differences), or by patient reviews.

Sometimes patients will say things like, "I went for a scraped knee" (not particularly helpful), or they'll say "I went for [some highly specific problem you have], and the doctor was highly knowledgeable and helpful". Or they'll mention dismissiveness, or willingness to listen.

Give it a shot, if you're looking for more info on the doctors on your list. Good luck!

[laurasari]

Personally I wouldn't recommend seeing a M S specialist initially there are so any diseases that share. Symptoms besides many ms docs won't see you till you have been seen by a general Neuro to rule other things out. You do however want a Neuro that is familiar with MS. I live on cape cod in Ma. the. MS society said no neuros on Cape Cod take care of M S patients. I asked my husbands he said after diagnosis he sends you off Cape. long ride for me.
Good luck
Laurie

[mgrant363]

It is very difficult, scary and time consuming, all at different times, going after a clear answer to your symptoms/questions. I started with PCP and moved to neuro for complete DX from MRIs, he said I had ms but cld not take me as patient and did not discuss anything with me, very arrogant and closed off. I got second opinion at Brigham and Womens in Boston and had a long (two hour) talk with neuro there, and then it picked up speed and hit me between the eyes that it was definitely MS.

If you have a tough time getting clear answers to your questions, don't give up and DONT settle for a neuro you don't get along with. They have spectacular egos some of them but, we get it, youre really smart... but YOU also know your own body so don't give up make them treat you, not just the symptoms. good luck to you