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Julie  Stachowiak, Ph.D.

Tips for Getting a Second Opinion for MS

By September 13, 2011

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There is a great deal of science that goes into the treatment decisions that a doctor makes concerning his or her patients with multiple sclerosis (MS). In clinical neurology around MS, there is also a healthy dollop of lessons learned from other patients, as well as judgment calls about the treatments that are best for individual patients based on non-clinical factors (such as likelihood to adhere to a specific treatment plan and lifestyle factors). There is also a great deal of guesswork.

MS, as we know, is not an easy disease to live with. Nor is it an easy disease to treat. There are many ways that neurologists can approach a single problem that an MS patient presents with. When a patient comes in with a cornucopia of issues and symptoms that they want to address, as most of us do, it requires that the doc balances different factors to come up with a treatment regimen that is not only (hopefully) effective, but that the patient can live with.

All of this is to say that different doctors will almost certainly recommend different treatment approaches to the same patient.

To really get to the point that I am trying to make: Get a second opinion if you are not 100% convinced that you are doing exactly the precise thing that is best for you. Or if you just want to see what else is out there. Or if you just want to test my theory about different docs prescribing different stuff.

Most people think second opinions are a fantastic idea. Then, many of these same people decide against following through. I know, I have been one of them that fails to actually do it. There are many reasons for this, including that it is a great deal of trouble or might offend my current doctor.

Do it anyway. This article gives you some tips for making it easier to seek a second opinion, as well as how to get the most out of your visit: How to Get a Second Opinion for Multiple Sclerosis

Comments
September 14, 2011 at 7:17 pm
(1) Michael says:

How about a 3rd. and 4th. opinion? Lesions were first revealed on an M.R.I. in the spring of 2008. My primary doctor wanted it performed to diagnose the cause of headaches I have had for years. The radiologist who provided the first opinion said MS. The neurologist called in to advise, said No it’s something else. The second neurologist, at a respected clinic, said Yes after he got the results from another MRI performed at his facility. He told me I was Primary Progressive. The 3rd. neurologist at this clinic brought in to advise me of what I could expect for disability, agreed that I was Primary Progressive and ordered a cognitive analysis. Now it is fall of 2011 and I have completed my first week of Copaxone injections. They were ordered by a 4th. neurologist at yet another clinic after yet another MRI, extensive blood work and a spinal tap. My patient wife and I traveled this path hoping to finally get a treatment protocol. This doctor diagnosed me as Secondary Progressive. I believe I’ll stay with this doctor a while as she is very understanding of my current limitations and seems to want to help me at least maintain my quality of life. I just pray my insurance holds out.
Michael

September 14, 2011 at 7:30 pm
(2) Don A in Pennsyltucky says:

Getting a 2nd opinion is more than just a good idea; it is something that everyone MUST do. The first neurologist made a diagnosis of MS based on a CAT scan taken during an E.R. visit and a follow-up MRI that was requested prior to seeing the patient. The prognosis was — daily injections @ $1500/ month and the rest is up to god. That’s when I subscribed to Dr. Julie’s email list.

The 2nd neurologist ordered more extensive tests including MRI of cervical spine, analysis of spinal fluid, and several motor response analyses from which he was able to rule out MS. But he couldn’t provide an alternate diagnosis to explain the leukoencephalopathy visible on the MRI’s.

The 3rd neurologist ordered genetic tests which were positive for CADASIL. What is most interesting is that many of the symptoms which are associated with MS are also symptoms of the leukoencephalopathy associated with CADASIL. The overall prognosis is still not great but the therapies which are useful entail generic anti-depressants, generic anti-anxiety agents, daily low-dose aspirin, generic blood pressure monitoring all of which combined are several orders of magnitude less costly.

September 14, 2011 at 8:40 pm
(3) Susan Wood says:

My doctor, at a highly respected MS clinic, is retiring. There is one other doctor in the clinic, who, obviously, can’t take on all of the retiring doctor’s patients, and I’ve been told that they don’t know whether or not they’ll be getting another doctor. They also have a PA, whom I’ve seen and like. But I feel that I would rather have a neurologist. There is another MS clinic at the other medical school in town, but I’ve heard really bad stories about the doctors there. What should I do? Should I find another neurologist even if he or she is not a specialist in MS or should I stay with the PA for now. I live in a major city with a major medical center–several highly rated hospitals and two highly rated med schools. I’m sure this sounds like a plethora of riches to most people!

September 14, 2011 at 11:02 pm
(4) Rose says:

We are In Australia & it is so concerning when reading comments from MS patients speaking about the costs etc of drugs & their insurance. We are lucky enough that the Government subsidises all MS drugs, the most anyone would have to pay is around $30.

March 14, 2012 at 2:25 pm
(5) Ric K says:

Second opinions are a great way to feel better about your doctors recommendations, but I would caution against it for two reasons. The first is that, like many conditions, MS is best treated early, and due to its ever-changing nature, the treatment will also change over time. I had to fight the hope to find that the DX was wrong, with the need to get started with the fight. The second reason is a bit more pragmatic. When/if the day comes when you need to qualify for disability insurance, you might regret all those differing opinions that will be included with your medical history. The last thing you want to have to explain, is why one doctor was right, and one was wrong. It begs the question, which one was actually right, which could delay your benefits at a time when delays are the last thing you need. So, if you think your doctor is wrong, or if you feel uncomfortable preceeding with his approach, then by all means, get the second opinion, but if you trust your doctor, my advice is get started with your treatment.

March 15, 2012 at 12:02 pm
(6) Stephanie says:

I initially went because I had headaches all the time. I always knew something wasn’t right since my mid 20′s. I was always at the Drs. I had a traumatic brain injury however the Dr didn’t call me. A blood clot in my brain and a large lesion. I only found out because I took my Mom and said Hey can I have a copy of that mri report. Needless to say I was upset. On to another Dr Another MRI more lesions. You are too old to have MS he says and even if you did I wouldn’t treat you there are too many side effects. Next. Back to the same practice who didn’t call me different Dr. Describe the things you call seizures. It feels like an electic shock is going thru my brain. Yes they are a type of seizure. He didn’t like the really BIG lesion. Lumbar puncture. Too late to repair the blood clot I am lucky still it lights up like a Christmas tree in an mri. Diagnoses MS. Pushing meds on me. I said No. NO NO. So far I still have the same amount of lesions however they are active at the moment and cognitive rehabilitation is in need. They are in all the important places I need to manage my life and are rather large. The Dr refused to tell me my MRI results over the phone and never called me back. So I had it sent to my regular md and I saw him. So NEXT! I don’t know what it is with neuros. Perhaps they would like to live with this for a few months and then decide. I have found they just like to cover their butts is all. I am in search of a new one. I think in addition to having this most aggrivating disease we don’t need aggrivating Drs too.

October 5, 2012 at 1:13 am
(7) Gail says:

I’ve been down this road for years in the States and have come to find they do a better job at DX in the EU than the States and one reason is they have always had universal care where they must try and cure things rather than just treat things to ring up a bill.

It has been found the MRI tests are wrong in MS about 80% of the time giving false + or false – but this is standard way and only way to get a DX in the States.

True DX is more from medical exam along with the symptoms. A good doctor in EU or even the States should have a great idea if MS or not and be done with it and start treatment. If treatment is working then continue and it is MS.

We have fallen behind in the States in education, wealth and health because of allowing it to be a big business to make money off of rather than to treat or cure the patient. Universal care is a start in the right direction but even that will need to be changed some next year yet it will start to save us trillions a year from ER visits and those near death from lack of preventative care with no insurance leaving 300k bills for taxpayers after death when something could have been cured for $3500 or other things treated for $70 instead of $2000 in an ER.

July 17, 2013 at 12:18 pm
(8) Sally says:

Hm, Gail, I can assure you that while you may think the US is worse than the UK/EU, treatment in the UK is much affected by concerns over costs of treatment, scans and drugs. On my recent diagnosis it has become clear that I have suffered from MS for many years yet was repeatedly refused an MRI scan when I requested one. I have been disappointed with the quality of care, long delays in administering and ordering of prescribed drugs, and some of the shocking things that have been said to me by both nurses and doctors. I imagine I am not the only patient in this position as they are now investigating the (lack of) health care in 11 medical services. A change in the health care system in the US may not improve things for you.

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