Bad doctor or good idea?

[bubblebabe]

Ok so basically I was diagnosed with MS about a month or so ago, I have legions on my brain and an abnormal VEP plus the usual sampling of symptoms (mostly annoying, nothing real serious).
I go in yesterday for a follow up and what I thought would be when I would get my treatment plan. On my previous visit they told me to start reading about the meds so I would know what direction I wanted to go when I came in for my appt yesterday.
Well, that's not how it went down. My VEP was abnormal but I have perfect vision and don't recall any vision issues in the past. I have had a few times where my vision was blurry when I woke up but it cleared up after I was up for a little while but they said that's just from being sleepy and not MS. They said they don't understand how my vision is fine but my left optic nerve is very damaged so they said yes you have MS but since you can still see and you can still walk its not that bad so they want to wait until I either lose my vision or can't walk before I start meds!!

That seems crazy to me, I thought we wanted to prevent more damage?
They said that since I can't pinpoint a flair, none of my symptoms have gone away and I've had them almost a year, that they don't know if it's ppms or rrms and the only way to know is if I just wait till I get worse cuz if its ppms then I would have taken meds for no reason.
Then they said if I want I could do an LP and I said well if I do it and its positive then what? They said we would still wait for you to get worse and if it's negative you still have MS. So I said then there is no point in doing an LP if it's not gonna change anything!!
They are sending me for a new lumbar MRI since the one had was a year old and it was for my back injury so I guess that's good.
So should I do the LP?? Should I get a 2nd opinion?? Does this sound like a good idea?

Thanks for your help!!!

[22cyclist]

Get your MRI and VEP results and get a second opinion. That sounds crazy to me. Are you saying that you have had no relief from your symptoms at all at any time since they started? Have you gotten new symptoms and did they also stay and not remit?

I think you need a second opinion.

Good luck
Lisa

[bubblebabe]

Yes ma'am, my right foot started going numb almost a year ago but I basically ignored it cuz I thought it was coming from my herniated discs. It's really hard to distinguish when each thing happened because it just steadily but slowly got worse.

By the time I moved to Georgia, this past August, my whole right foot was numb with tingling going up to the knee. So my doctor sent me for the nerve testing and it showed it was not from my back but neurological. Since moving here I have bad memory loss, cog fog, drop things, walk into walls, trip over nothing, say the wrong words, electrical shocks, body jerking and my right hand is going numb.
That's why they sent me for MRIs and stuff and they said 3 seperate times I have MS.

I told them look I'm not wanting to be on meds but I also don't want to do nothing and get more lesions and they said don't worry it's takes so long to get more lesions that I won't get that many if we wait a few months and I know that's not true!!

So no, none of my symptoms have gone away and I'm just scared that if I do nothing then I can cause some serious permanent damage.
Oh my name is Lisa too!! Thanks for your help!!

[bubblebabe]

I would love some more advice, anybody? LoL

[bubblebabe]

Well I figured I would update my post since I did get some calls yesterday.
They called me and asked me if any of my symptoms have gone away and I was like no just like I said at all of my appointments! Then they called me back again and moved my lumbar MRI and the nerve test on my arms up 3 days to Monday instead of Wednesday.
Then she called me back again and told me to go to the hospital on Wednesday for the LP. Might as well do it.
See when I go in I basically see the PA, I can hear the doctor telling her what to say outside the door, then she comes in to talk to me and he comes in at the end for 5 minutes to reiterate what she said.
It's very obvious she thinks I should be on treatment and that she doesn't agree with him.
He almost talks down to her and dismissed whatever she said. Shes the one who called me yesterday so I'm thinking maybe she is advocating for me to the doctor. He didn't want to do anything and just told me to call him when I couldn't walk or couldn't see, she was the one that setup more tests once he left the room and recommended the LP.
Maybe she thinks she can get him to take it seriously if I have more test, I don't know.
Well, thanks for letting me vent. I hate bothering my family because I don't want them to worry.
Lisa :-)

[BigA]

Babe,

I tried 3 different doctors before finally settling on the one I liked, the one I felt listened to me. The truth is, there isn't actually proof that any of the MS medications have any effect beyond 2 years. There are some studies which show they do, and some longer studies which show they don't - but I'm on mediation and I still think for now it's worthwhile. It's certainly reassuring in the beginning.

My point is that, believe it or not, the biggest difference a doctor may make is in how they treat you. So my advice is to simply go find another doctor. Not having faith in your doctor or being exposed to the politics inside a clinic is enough reason to run from that clinic. Don't worry you're making the wrong decision, that this doctor knows you. Certainly don't worry about their feelings or the expense if your insurance is covering it.

I also recommend you go to each drug company's website and sign up for their "educational" programs. Teva has excellent programs and it's never a hard sell. They also give you a nice dinner, usually in a nice hotel. You can even bring a date If you go on those, you'll learn about the drugs, meet doctors and other people with MS. You'll also see Neurologist accepting money for drug companies to send them on tours to talk about drugs and hopefully get new patients.

Get to know the territory. I promise you - one year from now you'll be amazed at how much you know.

[bubblebabe]

Thank you so much for such a great reply!
I really appreciate you taking the time to write out such an informative response. I love looking up info and reading about stuff so I will do exactly what you suggested.
Thanks again for spending the time to point me in the right direction.

Lisa :-)

[BigA]

I'm glad you found it worthwhile. We have so many questions when we're first diagnosed.

This was the book that most influenced my understanding of MS and worthwhile treatments. It actually changed my life.

http://www.overcomingmultiplesclerosis.org/book/

There's a website and a community and they take NO money from pharmaceutical companies - unlike other websites.

[suziq38]

....they called me back again and moved my lumbar MRI and the nerve test on my arms up 3 days to Monday instead of Wednesday.....
Then she called me back again and told me to go to the hospital on Wednesday for the LP. Might as well do it....
He almost talks down to her and dismissed whatever she said. Shes the one who called me yesterday so I'm thinking maybe she is advocating for me to the doctor.....
Lisa :-)

M.S. is very difficult to diagnose.
It is a fine line to say it is M.S. and then give a person that possibly does not have M.S. some fairly harsh drugs.

On the other hand, if you know you have M.S., you want treatment as soon as it is diagnosed properly.

That is what the NP is probably doing.

I am still not sure I have M.S.
No vision problems, negative L.P., brain scan, and blood tests.

It is just that my symptoms looked like M.S.

Make sure that when you do the lumbar spine they take MRI's of your Cervical (neck spine) and T spine (upper back spine) as well. They did for me, and there was a severe blockage in my upper spine.
After two very good neurologists, and two M.S. neurologists, I have concluded that I don't have M.S. at this time.

It doesn't mean that I won't get diagnosed with M.S. 5 years from now.

I don't have the come and go flare-ups, the heat sensitivity, or the vision problems. I do have the pain, the spasticity, the numbness in hands and feet, the leg weakness, etc.

We will just have to see with another brain M.R.I. scan to compare the two in March.

[bubblebabe]

Thanks Big A, I am a book junkie so I'm going to order that book today.

You are definitely Big Awesome in my book, lol, I'm a dork can't help it!!

[onlyairfare]

Bubblebabe, I'm sorry you are having such a hard time with doctors. When I read your first post, I thought maybe you were not seeing a neurologist, but maybe a generalist who didn't know much about MS. I agree with the other posters, you should get a new neurologist, or at least a second opinion from a different one.

There can be differences of opinion on when/if to start MS medications - some are conservative and wait until the diagnosis is definite and you are having multiple problems, while others are aggressive and prescribe medications as soon as the dx is made, or even if you have CIS. But waiting until you can't walk or can't see?!! That is crazy.

As for your optic nerves and why there can be weird patterns of loss, or it looks like bad damage but you have perfect vision, take a look at an internet website with an anatomical diagram with explanations of how we human beings see. It is a very complex system. I have had numerous episodes of ON, an abnormal VEP, an abnormal ophthalmological eye exam (my optic nerves are very pale, or so they tell me), yet my vision is correctable to 20/20.

Like BigA and others, I have seen many neuros before finding one I like and will stick with. Partly because we have moved several times, and partly because I also had brain tumor surgery at Mayo Clinic in Minnesota, I have seen 8 different neurologists since MS was suspected in the 1970's and then diagnosed. Now even though I am working in Arizona, I travel back to North Carolina to see my MS neurologist, as I think it is worth it when you find a good one.

Just hang in there! Even though it is a really bumpy road when you are first getting diagnosed and treatment started, and even though MS is unpredictable, things eventually level out - at least emotionally. And this website is a great place to help with that journey.

[MSW1963]

Any MS Specialist worthy of their specialist designation will want to personally observe new patients, un-dx'd patients and patients with worsening sx's, particularly in the beginning of the doc-patient relationship.

One of the most important skills a MS doc brings to the patient is the doc's observation of the patient during the Neuro Clinical exam.

Also listening to and understanding the patient's description of sx's before and after the clinical exam is an important skill for a MS doc, combined with the extensive MS training.

Sx's reported during the office visit will typically be examined and observed by the MS doc during the Neuro Clinical exam.

I would not trust a MS doc who relies upon the observations of a PA for a new, un'dx, or a patient who's sx's are getting worse.

Treatment protocol for most MS docs' for a patient who is somewhere on the spectrum of RRMS and SPMS, is to officially dx RR and chose treatment in the hope of stopping MS progression, even for patients who have already progressed to SP, because the only treatment options available are for patients officially dx'd RR.

Observing the patient early in the dx process to determine MS status is not unusual. A month to six weeks is probably typical, otherwise I'd expect a doc to explain any delay.

[bubblebabe]

Sorry it took me so long to reply, I use my phone to access this site and for some reason my phone would not let me reply so I had to wait until I had a chance to get on my regular computer.

Thank you all so much for the replies!! This site has been a God send and you all seem like amazing people.

So glad I found you all and I will keep you all updated!

Lisa