I would still be following up with the Lyme disease possibility too.

You have migraines, diabetes, are in the "older" category, etc. . . . and all those factors 'seem' to fit with the lesions they've identified. I don't recall what your symptoms are, but it is sometimes hard for them to distinguish MS symptoms when there are other KNOWN conditions/illnesses clouding the picture.

If your symptoms are debilitating, and the cost does not prohibit another opinion at this point, I think it would be worthwhile to get one. Even if they can't identify MS as the "cause" for your difficulties, you are still suffering, and may not be able to work anyway.

Did you see one neuro years ago, or how many have you seen all up?

Cherie

Oh my dear Seara...do you bring back memories of me..then and now. Just wanted to tell you that I understand..more than you know.

Here is my take on this. I had to STOP thinking it was MS..even tho MRIs were suggestive.. my PCP did refer me to an MS specialist. For a short while my MS neuro thought it could be a mild case and was willing to monitor me..but not treat it. OK with me...I dont want those meds..another story.Then finally he said no its not MS.

He DID validate that "something" was definitely wrong.. neuro like..but it has no name. OK..i give up on MDs..but he did send me to another neuro in his office to find out. Now this MD got really excited thinking I had narcolepsy with cateplexy.

Again.. job changes..new insurance..no more seeking DXs or neuros...and this new PCP..said when she heard my history.. and they dont think you have MS?? And they dont think you dont have seizures??

BUT

Miracle of all miracles..she sends me to her mothers neuro out of network for me..who specializes in neuro muscular and autonomic problems..like her mother has. I am going to give him a try.

So.. as hard as this sounds.. not everything NEURO IS MS!!

Because of your migraines..which are very serious and show all kinds of changes in the brain.. mix in our American Diet of chemicals..breathing chemcials..we're seeing ALL kinds of people with neurological symptoms. There IS something wrong!! but it may not have a name like MS>!!

Many MDs do not have the guts or training to say I DO NOT KNOW WHAT IS WRONG with YOU. You do not fit into any boxes I studied!! Believe..some are good and try...but when you dont fit nicely in their diagnostic boxes...they make up stuff.. that sounds like they know.. rather than say I DO NOT KNOW> This NEURO you say IS probably still thinkking of what you told her about being invalidating.. but.. depending on her ego..not sure what she'll do about changing her attiutude.They are so lost..when they can't name it ..test it.. or write a RX for it~!!!

OK.. I said this is MY POINT of view.

Stay here please..like I do from time to time.. to ask questions.. share frustrations and GIVE back to others in the struggle.. you'll never be alone..trust me ok?

Warmly Jan

P.S. I found a guru of a nutritionist that has detoxed me from heavy metals..built up my depleted toxic deficient systems and helped A LOT!! So much so with balance and cognitive problems that my neuros send me to him when I have a flare!!! Yup..go figure.

Seara, There's no need for you to leave! Stay here with us. I'm sorry you had such a terrible experience with that neuro. We will never invalidate you here. We do understand. I'm not sure if this was already a 2nd opinion,but either way, I'd seek another opinion.

hi seara,

i'm sorry about the md visit. i would follow thru with the letter. don't let her get away with this behavior without a fight. something written is appropriate. but stick to the facts. be impartial.

from what i read on the mri, and i'm no expert, is that none of the lesions are enhancing, or active. i can't say what could be causing them.

i had a friend with bad migraines and her neuro started giving her botox shots. it's helped a lot. even had it approved by insurance.

and btw, don't leave. stay with us while you struggle thru this. now you're part of our family.

Hi seara,
First of all, never let anyone get to you like that. To make you feel that way.
Like that Neuro is perfect in every way, yeah right!

Think about this. We all had to be in Limbo-Land before we found out what was our true ailment. Even then, some have had it changed again, back and forth.

Doctors do not all have good bedside manner. I met a few green frogs along the way too. I think I could've taught them. Remember not all finish in the top of their class. They all have different personalities, knowledge and some don't follow up on the latest classes and seminars to keep updated.

This doctor really might not know what is wrong with you, maybe the last one or the next one won't either. But take a deep breath and just get symptom treatment for what is bothering you now.

Don't mention MS. Doctors hate to be told what YOU think you have. They want to call it, whatever it is.

Have patience. It takes time , we all went through this for years. Some get Classic MS MRI's with classic symptoms, with Classic testing and they get Dx'd right away. Mine presented itself in a hard to figure out case. 4 years with visible symptoms.

Also don't feel you have to have a dx to be on any website. Just be here and talk, support us and we support you in all matters. It just takes time. Calm down cool off and come back.
Lady

Hi Seara,
You did such a great job in dealing with the Neuro - so glad you spoke up as you did. It is obvious from your scan that you do have some things going on that the doctors can "see" from the lesions so at the very least you do have validation in that area.

I hope you will write the letter and hope you will stick around here -
Congrats on the grandchild coming and stay strong while you work through all this.

It may take a while to find a good Neuro but they are out there.

Best of luck,
Snoods

Ditto what Lady said! Especially about mentioning what you think it is (MS). They hate that. Try to just list your symptoms, and let them take it from there. Bite your tongue if you must.

I've made an appt with my regular doc for this Thursday at 1pm. I will present all symptoms as I tried to do with the neuro. I really didn't go to her and say "I think I have MS". I explained I had been tested for it in the past, could this be a recurrance? I accepted her dx as not being MS. God knows, no one really wants it eh?

I don't have the energy to fight....I don't have much energy to even post here. I would love to stay and support folks...thanks very much for asking me to stay around. I will do that. But right now....the energy is just not there and I do apologize, since everyone has been so wonderful with me. I really want to return all this great support back to ya'll.

I just need to get thru my daughters baby shower on Saturday....delivery on Feb 12th and go from there I guess. I'm just sad....and tired....and scared

xoxoxo
seara