Third Opinion is NEGATIVE for MS!

[melodystiles]

For those of you who were so kind to me yesterday, I am following up as promised. I was diagnosed with MS in October of 2012. I went to the Cleveland Clinic for a second opinion in December and was told I needed to have an LP but that they were "90% certain" it was MS. The Cleveland Clinic then referred me to an MS Specialist here in Indianapolis in the new IU Neuroscience Center.

His name his David Mattson, MD/PhD.
My husband and I just spent nearly 3 hours with him. He told me he is "not at all convinced a diagnosis of MS is justified at this time. Your MRI had no enhancing lesions. Yes, you have lesions, but those can be from many different things. Yes, you have Optic Neuritis, but that doesn't mean you have MS. I don't think a spinal tap will get us anywhere really, at this time. I want to see you again in 6 months for follow-up and I want to repeat this MRI in October (one year from the date of the last one). Do NOT start the Copaxone. AND, I will be sending my note to the Cleveland Clinic."
When I asked him what percentange he would give me of having MS, he said, "10%".

Responses?

[22cyclist]

Since he took all that time with you I would tend to lean that way (the 10% way). Plus he is still going to follow you in 6 months and do another MRI in 1 year. Sooner if needed I suspect. Sounds like you have a good MS specialist who doesn't jump to conclusions. Sorry you are still in limbo, but better safe than sorry with DMDs.

Try to continue to be patient, and call him when you have exacerbations.

Take care
Lisa

[melodystiles]

Thanks, Lisa

I am feeling very conflicted. On the one hand, I am ELATED and on the other hand, VERY frustrated. I swear to you, I no longer take anything any medical professional says to me at face value.
I don't mind being in Limbo, actually. What I MIND is all of the grieving I have done over the past few months, all of the feelings, etc, that now seem insane. I feel anger towards the first neurologist and even the Cleveland Clinic. Sheesh!

[sewhappy]

Melodystiles,

Yes, it is understandable that you have conflicting emotions.

I live in the Indy area and know that Dr. Mattson has a wonderful reputation. He is not my doc, but I have thought of going to see him. He is on the board of the local MS chapter here and is highly regarded.

22cyclist has given you good advice. I would only add to please try not to stress about this too much. Stress can be a trigger for many illnesses so take a few deep breaths and move forward with you life. Take care of yourself and follow up with him in six months.

[melodystiles]

Thank you

Thanks you guys

[Whimpurr]

I do not want to be negative but this actually scares me that 3 different doctors or at least two can be so totally opposite in their conclusions! How are we supposed to ever feel secure with our diagnoses for anything? I don't know all of your symptoms but I know that I would keep being tested even if it means having an LP to be certain. Hugs to you!

[melodystiles]

I know!

Whimpurr:

No kidding! Scared? I am feeling uncomfortable. As I said in my former post, I no longer take anything from any medical professional at face value. I am going to do as this man recommends for now. I will see him in August and I will ask him about the LP at that time. Not that I really want to have an LP, please do NOT misunderstand THAT! But, yes, I am just blown away by this as well.

[JerryD]

melody,
Doctors aren't gods. They all have problems with this ** disease. There are a lot of mimics. I don't know what you have had tested but I would try not to be too aggravated.
Instead, do somehings for yourself that they aren't. Start by finding out if your vitamin D, B-12 and magnesium levels are high in the 'ok' range. Begin taking a vitamin B complex daily. Stop eating and drinking dairy. Stop eating gluten. Don't eat more than 4oz. of red meat daily, less is better. There's a lot of stuff you can do for yourself that may have a positive effect on your situation. Good luck

[melodystiles]

Already am

Thanks for the good advice. I am already gluten free (Celiac disease diagnosed last year), am vegetarian and have been since age 7, DO eat dairy as recommended because of osteopenia and needed calcium. I am still working part-time as a psychotherapist/substance abuse counselor and do meditation daily. I have done yoga, etc.

I know only too well that Doctor's are not Gods, because I have many Doctor friends. What is scary to me is the lack of willingness amongst most doctors to disagree with a former colleagues' diagnosis of a patient. What is scary to me is how many people NEVER get a second opinion, let alone a third like I did. What is scary to me is the expert I saw today told me that if I had gone on the Copaxone that the original neurologist told me to do, even he would have had a hard time telling me to stop using it. And, THAT, my friend, is the scariest part of this entire scenario for me.

[poohb3ar]

it is sooo frustrating when drs. disagree. surely they don't realize what havoc they cause in our lives when they dx then un-dx, etc.

sounds like you've been through the ringer lately!
bless your !

i've been (am going) through similar situation. was dxd in 2002 and then in 2011 had a highly respected MS neuro (head of clinic) undx me, but without ANY tests!
she did the watch me walk, looked at old MRIs, and the regular squeeze, push, etc. but that is all and she had the gall to tell me that i'm 'doing too good' to have MS this long!!!

when i've worked my butt off to 'do this good'!

sometimes it's hard to know who or what to believe!
it's your body, you know how you feel and that something is wrong.
from what you said, it's hard to understand the not sure MS dx. but i'm not a dr.
since you have someone from your area and knows that he is a well respected neuro, you might want to give him a try.

but if this is bothering so much, as it sounds it really is, find a neuro that you're comfortable with. or at least get another opinion or share your feelings with this neuro who is suppose to be so good.
maybe bedside manners isn't his strong suit, but if he spent 3 hrs with you that in itself says A LOT!!!
i practically have to block the door to talk to my neuro!

sorry there's no easy answer.
i pray that you find the right answers and dr. to help you.

God bless ya!

[melodystiles]

Thank you

No, bedside manner is not his strong suit, but I don't need that. What I need are answers. Yes, he spent 3 hours with us and that IS a LOT and I respected how thorough he was and the time he took and the fact that he wants to follow-up with me and repeat the MRI. I respect the fact that he is clearly not someone to jump to conclusions and was, I felt, incredibly honest. I felt very comfortable with him and SAFE. I believe this man will NEVER tell me I have any diagnosis unless he is absolutely certain. And that means more to me than I can put into words.
Meanwhile, I will do as he recommended. Continue doing what I am doing to be as healthy as I can be.
What else is there, in the end, to do?

[acaverly]

It seems like they should be doing testing to rule out other things like lupus and other immune diseases. I know it is frustrating not knowing, I am still there myself. It seems like a LP could give them the answers. Good luck.

[suziq38]

I am feeling very conflicted. On the one hand, I am ELATED and on the other hand, VERY frustrated. I swear to you, I no longer take anything any medical professional says to me at face value.
I don't mind being in Limbo, actually. What I MIND is all of the grieving I have done over the past few months, all of the feelings, etc, that now seem insane. I feel anger towards the first neurologist and even the Cleveland Clinic. Sheesh!

I am going through the same thing, only the opposite results.
Two neuros have told me that I don't have M.S., and so therefore I can proceed with my much needed spine surgery.

I then had to go to an M.S. specialist that said: "Let's wait on the surgery, even though all is negative (blood work, brain scan, nerve tests, LP) you still may be pat of the 5% that still has it." He wants to take another brain scan in March. Fine.

So now I am still in Limbo.
All I know is I do not want the drugs if I do not have M.S. at this time.

[I do not know what it is]

Wow Melody...

That is a tough situation to be in! I hope you are able to get more clear answers soon. It's good that you are taking care of yourself though.
Hang in there.

[melodystiles]

I am So appreciative of this discussion

You guys are WONDERFUL! This is the BEST discussion I think I have ever had about MS since I was diagnosed. So for that, I thank each of you.

Yes, this is just mind boggling. I think I kept demanding more answers because I have been given so many diagnoses over the past 5 years, I've learned to be skeptical. Still, MS is a HUGE diagnosis and I have been through hell these past several months emotionally speaking, as I'm sure all of you have as well.

Regarding the LP: Of course I am willing to have it done. But if you asked me if WANTED to have it done, I would be a liar if I said yes. He mentioned it yesterday by saying, "I suppose we could do a spinal, but I just don't think it's going to give us that many answers at this time. Okay, yes, if you had a positive banding result, it might help a bit. But even that isn't definitive and I don't think it's worth it to put you through that unless we have good reason to."

So, if that helps to answer the LP question, you have his reasoning. His name is David Mattson, MD, PhD at Indiana University Neuroscience Center, Indianapolis, IN. He is on the Board of the State Chapter MS Society and he is the neurologist other neuros in the state consult when they have a questionable case.