I am going to get a second opinion.

[Sidesteps]

If y'all didn't see my long post trying to sort my thoughts and emotions in the other forum --- well, after much deliberation and being my own devils advocate, I've decided to seek a second medical opinion.

When I was in the active phase of my disease, I had seen two Neuro's that didn't take me serious because the radiology report said my brain was free from lesions. I sought a third opinion with a MSologist who has ran many tests which most came back negative for. The two things that have shown insight is my new radiology report shows 5 lesions (that were present (large lesion) or likely present (smaller lesions) in the previous scans. The radiologist missed the large lesion and none of the other Neuro's caught it either.

Now, I have 5 lesions and an OCT that reflect to my Neuro-Ophth early MS....and my MSologist is saying the same but also giving some mixed messages. She's not really being clear with certain statements which might work well for someone who wants to be in denial with commenting that it may be benign or early and the lesions don't explain my symptoms. Either way, I am left concerned and am not sure what's direction is in my best interest. I wrote this to someone that had PM'd me about my other post and I thought I'd share, so this is why I've opted to get a 2nd opinion.

"I had a surprise last night with my sisters best friend (from California) come to my parents for the party. (It was my fathers, sons and sisters birthdays this week.) She has MS. I walked in and my sister said they were discussing my symptoms and where I'm at right now. I explained what was on my mind and concerns. I told her I'm trying to be patient but it's difficult when I'm not sure that is in my best interest.

She doesn't think waiting another 5 months is in my best interest as fast treatment is vital. We talked a bit about medications as she reitterated that even a person with one attack is now offered medications. She doesn't understand why she's waiting with the types of other things she is saying. She also agrees benign MS is rubbish. Her Neuro doesn't think there is any way to indicate the severity of the disease course as it frequently changes;s o she is being treated aggressively. She's on Tysabri and loves it.

So --- she is going to get me the name and number to a Neuro at UW (who she was recommended to highly for her Mom.) I'm going to get a 2nd opinion --- it's silly not to ---as if this was cancer and someone said "yeah, you have cancer cells in your blood but there isn't enough there to treat, lets wait 6 months then check again." Everyone would think it's crazy to wait and not get a 2nd opinion. I am not sure this doctor will be a MSologist but I think that's ok, I want an objective set of eyes looking at me and feedback...I want a doctor that will be direct and forthright with me as to "why we wait and see" or "why we treat."

I've wasted valuable time with incorrect information on my reports and no-one taking me seriously from that. I am not about to waste another 5 months to see if I have lesion progression or another flare. I am not sure "changing doctors" is in my best interest either but I do think getting another opinion and set of eye to look over the information is. At least, I'll get one more piece of information... I hope. lol ~

I've been feeling a bit lost lately.

[Sidesteps]

WOW! That is a LONG time. I'm sorry to hear that Tracy.

[Jacksmom516]

Good for you - You are absolutely right if this were any other disease a 2nd opinion would be the norm - well it should be for this disease too-  Hopefully you can get in soon.  I have an appt with a MS Specialist -  in MAY!!!!! that is first available.  My neuro suggested seeing a specialist as she is not!  Don't think she thought it would be 6 mos post dx!

Anyway - let us know when you go!

Take Care
Tracy

[Sidesteps]

Thank you ladies,

I talked to my husband last night. I think this is just a smart move considering the new information. I want to make sure we have looked at everything. I have nothing to lose other than gaining more insight.

I'll see when I can get in and let you know; so for there has only been about a 6 week delay.

I'll keep you in the loop. :)

[MrsAristotle]

I agree with the girls. Go for it, what have you to loose.

I hate this rubbish. Why is it so hard to get taken seriously....grrrrrr dont get me started to day lol.

My left foot well the toes feel as though someone has chopped them off and exposed all the nerves. Its poopy and I have had this for nearly a week.

What is the point of seeing the doctor. She will just give me one of her looks and I cant cope with that.

So i just wait for the nervous system to go and play on another nerve ending lol, probably on my bum knowing my luck ha ha.

Big hugs...just go for it. xxxx

[Sidesteps]

LOL, you crack me up Sarah.

We can become osterich's but I think we might notice when our butt gets to the same height as our heads. I don't know about you but I can only stand only do the downward dog for so long. *wink*

I did some research today and found out two of the doctor's on my insurance plans are on the MS Summit so I'm picking on of them and going to see what they have to say. Maybe I'll learn something. :)

[sarahw244]

If there was a like button on this forum like there is on facebook, I would like your post.  But since there isn't, I agree with Jibby....

Go For It!!!  Someone around here needs to get somewhere at some point in time, lol!

Let us know what happens, when your appt is etc.  I have the feeling in another week I'm going to be sent back to a neuro myself to see what they want to do with me.  This new doctor will probably send me; apparently you can't have a neurological disease and not be under the care of a neuro?  Why not?!?

Anyways, good luck and let us know!
Sarah

[jibjen]

I have 3 words for you -

Go for it!

Jibs