Second Opinion?

[Bamfan1442]

Hi everyone! I want to get a second opinion but I need some advice if any of you have been where I am. So far I've had an MRI (back in July) and a spinal tap (back in October), both ordered by my Neuro. The diagnosis was possible MS, several small lesions on my brain and no O-bands showed up in my spinal fluid, but had high levels of proteins. I also had seriously low levels of vitamin D and B12. That puzzled him so he won't give me a definite MS diagnosis. My only problem with that is he doesn't specialize in MS, he is the director of sports neurology at the neuroscience center where I had the procedures done. There are a couple of MS specialty centers at hospitals here in Michigan but they are about a two-hour drive away and I'm not sure if my insurance will cover transportation there for a second opinion evaluation. Do any of you think it's worth the trip and should I request an appointment with one of the lead Neuros or just any one of them at the clinic? Just wondering if it's worth the trouble and added stress to my already confusing and complicated situation? Thank you for reading and hope some of you can help me out here! ❤❤

[mrsmike]

I was diagnosed by a head Neuro at one of the hospitals in NYC, but he insisted I see a neuro who dealt strictly with ms, recommended three, and I'm glad he did.

[ssdw1958]

I know Two hours is a distance away are you sure there isn’t anyone closer. Well I would contact your insurance company they may have a list of neurologist you can see. What ever you do take your MRI and spinal cord records and any thing else with you. Remember they are yours you paid for them.

I also think I would have a MS specialist they know the medicines you need to have.

Good luck to you.

[Bamfan1442]

Thank you @mrsmike and @ssdw1958! I forgot to mention the MRI I had was only of my brain and neck (cervical). I am wondering also if I should get an MRI of my entire spinal cord (back)? I've been doing some research and saw that lesions can also appear on the spine. Im worried that I may have lesions there too that weren't seen on my brain or neck. 😖

[ssdw1958 in reply to Bamfan1442]

When I go for my MRI I have both done, the Brain and Spinal cord and when you change your doctor you should have your MRI done with then. I just am saying this because an MRI should be done with MS specialist. They know what to look for.

[erash in reply to ssdw1958]

ssdw1958 Bamfan1442 i was told most lesions will be brain and cervical spine

Fewer thoracic spine and unusual lumbar spine

[rjoneslaw]

@bamfan1442

Get the 2nd opinion

I travel 2hrs every 3 to 6 months to see my neuro. I have to say it is well worth the drive

[dianekjs]

Absolutely seek a second opinion with a neurologist that specializes in MS, it’s very important, particularly when a case isn’t straightforward. And even if it were, a general neurologist or sports medicine neurologist simply isn’t going to have the same level of expertise and definitely won’t be as up on the most current treatment options. This is your central nervous system, get the very best care you can. Best of luck to you.

[erash]

Yes, likely worth the trip to get accurate diagnosis and appropriate treatment

[Jesmcd2 CommunityAmbassador]

I agree with them ^ Bamfan1442 you have a right to a 2nd opinion!😊 And I would think you can get a referral to an MS Clinic.

I travel 2hrs for any MRI's or Neuro appts I have. It is well worth the day!😐😄

I can get you the MSAA number of you like!😉

~Hugs n Luvs ~

J 🌠🎄

[Royjr]

I’m not sure but I think most insurance pay for second opinions especially if you feel you need one. You press on what you feel is best for you. Good luck!!

[bxrmom]

After first being diagnosed with MS, I requested a 2nd opinion and my insurance at the time gave me the name of someone who could do it. Traveled about 45 minutes and she took one look at my mri reports and said I definitely had MS. Call your insurance company to see about a second opinion and how to go about it.

Good luck, keep us updated!

Jessie

[RobertCalifornia]

If it was me I would go to a MS specialist. I was going to a general neurologist when a Dr friend of mine (allergist, imunoligist) asked me why I wasn't going to a MS doctor at the teaching university medical center where they have a complete MS department. I am glad I did. The MS Specialist eventually changed my diagnosis to PPMS. She was the first doctor in the state of California to give an Ocrevus infusion once it was FDA approved. I was told this by the Genentech rep at a MS walk. My first infusion was in June only because of an insurance company issue. Otherwise it would have been in April. That means she got me approved for Ocrevus in no time.

[Bamfan1442]

Thank you everyone for your replies! I am doing my research on MS Specialty Neuros here in my state who are affiliated with hospitals that have MS clinics/centers. Then I will call my insurance company and make sure they will cover the visit. It's been an exhausting and daunting task, trying to narrow down which Neuro I want to see. There are several to choose from, I just haven't decided which one! 🤔 But I figure it will be worth the time and effort in helping me find the right one. I'm reading their bios, credentials, etc. Whew!!

[Frances_B]

The "seriously low levels of Vitamin D and B12" would most definitely cause the neurologist concern - a B12 deficiency is one of the mimics of MS which a doctor needs to rule out as part of the diagnostic workup for MS. B12 deficiency is quite easily treated, and is far more widespread than people realise, especially with the current proliferation of people eating vegetarian or vegan diets without ensuring they are getting all the right nutrients. If left long enough, the damage caused by a B12 deficiency can be permanent. It is possible that your symptoms and lesions could be from B12 deficiency (note that I have said "POSSIBLE"). Given the other test results you have noted, your current doctor (and any other doctor you see) would need to address your deficiencies before being able to make any further progress towards a firm diagnosis of MS.

Also, around 10% of people with MS do not have oligoclonal bands in CSF so not having them is not definitive one way or the other. Additionally, many people will have small lesions visible on an MRI but they don't have MS, so the scan is not necessarily conclusive of MS either.

You need to seek whatever medial advice you feel necessary, but don't try to pre-empt what any specialist might diagnose. The MS forums around the web have way too many people on them who have decided that they have MS even though they have not sought appropriate medical advice or opinions, and this makes me wonder what it is that they may actually have which is not being appropriately treated because they have already decided what their problem is. Diagnosing MS is not always straightforward, and even though modern tests and technology have improved this, it can still be quite a lengthy process.

[RoseySawyer]

I really think you should get a second opinion and get a for sure diagnosis. My first neurologist didn't know what to do when I paralyzed at home. My husband's uncle recommended a Neurologist that specialize in MS and I'm walking. I was making an hour and a half hour trip just to see her. Now I live closer so the drive isn't as long but it was worth it because I have 2 kids. I really think you should call the insurance and figure out what to do because that 2 hour drive can save your life.

[Linda3579]

I feel as if I am getting much better advice since I switched to Stanford MS clinic. Wishing you good luck.

[sianr]

Hi there

It’s all such a worrying time , the not knowing is the worst. Personally I would ask the doc who saw you to contact ms specialist and chat to him/her about your symptoms however the danger there is he may not pass on the relevant or all the information , if you can get an appointment with the doctor who is 2.5 hrs away referred by the doc you’ve being seeing. I would want to be seen by a specialist in the field. MS is hard to diagnose its better being seen by those who know more.

Stay hopeful on your journey

SA

[Bamfan1442]

Well, looks like I have a tough decision to make now:

I can't keep my current PCP whom I love or get a second opinion with a MS Specialty Neuro because my insurance won't provide the transportation, both of them exceed the mileage allowed. So that means that if I want to see the MS Specialty Neuro, I will have to re-locate and find another PCP on the other side of the state. Problem with that is I don't have any income (SSI case is in appeal process), so I would have to go to another shelter. And be all alone in an unfamiliar city without any friends or family. I would be further away from my son than I currently am. I don't know what to do. 😥 Things are hard enough for me to deal with already. First Xmas away from my son and now trying to face the harsh reality of having to take a bus trip without all of my belongings, and leaving things behind to find out a definite diagnosis.