[distractingAmanda]

Had MRI, EMG, EEG, SEP tibia and median and VER. Everything came back normal except VER. asked dr. why he said he didn't know, can't figure it out he said he doesn't know what is causing pain so will treat me for fibromyalgia, all of the other (long) list of symptoms he doesn't know whats causing it, maybe migraine...I said so fibromyalgia is causing my vision to blur when i work out? he said he didn't know and threw a tempur tantrum...i had questions about spots on MRI but wasn't going to ask any more questions after that.. he started off appointment by saying i for sure don't have MS-which i understand is a possiblility but what was the point of the VER if he was going to ignore it when it came back abnormal? and from what i've read you can't definitely rule in or out MS from tests, you have to take it all in...is this common for neuro to do, and how he should have treated me and the situation?

[Dejibo]

it is VERY common for a neuro to not want to throw you into the MS pool. Many things in your life will change once that happens. You wont be able to get long term insurance, disability insurance and other such things.

Please know that being diagnosed with MS is a LOOOOONG process for most of us. We dont feel good, we dont feel believed, we are treated like we are drug seeking and instead of the MD telling us he doesnt know the answer and sending us to someone who may, he starts guessing.

Please get to an MS center. They are pro's at sorting out all of those tests. EVP, to MRI, to Spinal taps. Please know there are more than 100 diseases that can mimic MS from vitamin def, to lyme, lupus, shjoghrens, RA, TB, and so on. The MD will run a bunch of test and start to "rule out" instead of trying to guess what it is, he is trying to prove what it is not. If you see his line of thinking like that, it can make his behavior easier to understand. Once he gets to the bottom 10 of that 100 or so, these are the ones that you cannot prove someone has or doesnt have. Sometimes they diagnose MS without any of the clear signals, and then the patients turn out to have something else. That would upset me just as much.

Please think of what you would do differently if you had the diagnosis? Would you eat better? Exercise more? take measures when exercising to protect yourself during low vision? Avoid baths? Go Gluten Free? Go on the swank diet? Take vitamin D3 at 2000mg a day? Add CLA (congugted linolaic acid) add a multi vit? Avoid triggers? Well, you can do ALL of these things before, during and after diagnosis. The only thing that would change is that you would be asked to choose a disease modifying drug at 4k a month. Check your insurance and see if they cover it. Do you have a cap on your monthly expenses or will you have to pay for some out of pocket? Rest! find moments of laughter and joy. Do what you can to take great care of yourself. Keep a symptom journal. Keep a pain journal. Do yoga! learn to meditate and deep breathe.

Dont wait for some MD to give you permission to start to fix your life before the label gets here. You drive the bus! drive it to a new MD. Drive right to the MS center. Even if you only use them once for diagnosis.

[distractingAmanda]

Originally Posted by Dejibo

it is VERY common for a neuro to not want to throw you into the MS pool. Many things in your life will change once that happens. You wont be able to get long term insurance, disability insurance and other such things.

Please know that being diagnosed with MS is a LOOOOONG process for most of us. We dont feel good, we dont feel believed, we are treated like we are drug seeking and instead of the MD telling us he doesnt know the answer and sending us to someone who may, he starts guessing.

Please get to an MS center. They are pro's at sorting out all of those tests. EVP, to MRI, to Spinal taps. Please know there are more than 100 diseases that can mimic MS from vitamin def, to lyme, lupus, shjoghrens, RA, TB, and so on. The MD will run a bunch of test and start to "rule out" instead of trying to guess what it is, he is trying to prove what it is not. If you see his line of thinking like that, it can make his behavior easier to understand. Once he gets to the bottom 10 of that 100 or so, these are the ones that you cannot prove someone has or doesnt have. Sometimes they diagnose MS without any of the clear signals, and then the patients turn out to have something else. That would upset me just as much.

Please think of what you would do differently if you had the diagnosis? Would you eat better? Exercise more? take measures when exercising to protect yourself during low vision? Avoid baths? Go Gluten Free? Go on the swank diet? Take vitamin D3 at 2000mg a day? Add CLA (congugted linolaic acid) add a multi vit? Avoid triggers? Well, you can do ALL of these things before, during and after diagnosis. The only thing that would change is that you would be asked to choose a disease modifying drug at 4k a month. Check your insurance and see if they cover it. Do you have a cap on your monthly expenses or will you have to pay for some out of pocket? Rest! find moments of laughter and joy. Do what you can to take great care of yourself. Keep a symptom journal. Keep a pain journal. Do yoga! learn to meditate and deep breathe.

Dont wait for some MD to give you permission to start to fix your life before the label gets here. You drive the bus! drive it to a new MD. Drive right to the MS center. Even if you only use them once for diagnosis.

Thank you so much! I started making changes to my daily life a while ago and find the best way I deal with all of this is to focus on my children and each day do the best I can to distract myself from all of these new normals. I was so upset yesterday, looking back I think he was getting defensive because I was asking questions-he kept saying 'I don't know' 'I don't know'. Just so frustrated...feeling crazy again. Will just pray that whatever I do have will not get worse.

[ANNagain]

DistractingAmada, Welcome. I love your name.

Deijibo has given you the best advice I have ever read. Advice I wish I had been given.

Make sure that your symptoms are treated- pain, vertigo- and make sure that you are taken seriously.

Whether you stay w this doc or go elsewhere, they will need to see you over time. What changes over 6-12 months or two years? That's important.

My best to you,
ANN

[ginnie]

The display of that kind from a doctor is never OK. That is something only a two year old does, and sometimes they have more contol than that. I am sorry that happened to you. I am glad you found Neruo Talk. You will find alot of support here, information and compassion. Getting a MS diagnosis is indeed hard. Do visit the MS forum but just typing in MS under the search bar at the top of the page. There are quite a few MS patients that also went through numerous test before getting any diagnosis. I hope youdo not have the disorder and that resolution can be found. Please consider finding a doctor who specializes in just MS, and someone who doesn't have a hissy fit. I have been here about two years now, and I have heard of other doctors not acting very professional. Try to move on, there are good empathatic and knowledgeable doctors out there. You can also type in what state you are in, and perhaps somebody could give you the name they go to in your state. Again Welcome to NT. I do wish you all the best. ginnie

[SallyC]

Hi DistractingAmanda. Are you Amanda or is that a two year old you need to distract?

After Dej's great post. The only thing that's left for me to say is...WELCOME to NeuroTalk!!!

[distractingAmanda]

Originally Posted by SallyC

Hi DistractingAmanda. Are you Amanda or is that a two year old you need to distract?

After Dej's great post. The only thing that's left for me to say is...WELCOME to NeuroTalk!!!

Yes I am Amanda...and also I have a 2 year old and 5 year old to distract Thank you all sooo much...I couldn't help but feel at the dr. that because he couldn't see anything else he was just throwing stuff out that (that also has no physical evidence) Then 2 things that have been consistent is my pain and my blurry vision...never random...only when working out or getting warm. The fact that the test came back abnormal and he only says "idon't know" he didn't say maybe the test was done wrong or something just "i don't know" WHAT?!! So I will on my own have a dr. look at my optic nerve-blindness runs in my family (glaucoma and macular degeneration) so if this is something else i should worry about i want to know. all of my other symptoms have been completely random and strange and i never know when something will happen, I guess its my new normal and thats ok...I think that what upset me the most was the fact that not only was he acting like he was dismissing me but then him yelling at me was ridiculous. Literally yelling at me.
Thank you so much everyone for the great advice!! I just know that the horrible experience was a blessing in disguise!

[SallyC]

Yelling at you. He's either a burnt out old Doc or a young wippersnapper with little knowledge and no patience. You definately need a second, maybe third opinion.

Hand in there.

[distractingAmanda]

Originally Posted by SallyC

Yelling at you. He's either a burnt out old Doc or a young wippersnapper with little knowledge and no patience. You definately need a second, maybe third opinion.

Hand in there.

Thanks so much for the support-I'm sick of defending myself, and sick of having to go over the stupid long list of "symptoms" i'm having. And yes he is a young dr. (looks a pakistan version of doogey houser-not sure on spelling) how did you know LOL. Nobody understands that no matter what I just need support, I don't need to feel crazy. So I'm in the process of getting the steps moving forward, test results and notes faxed to my dr. at home he has been kind and helpful wanting to help me find a solution

[ANNagain]

Amanda, see if Uthoff's sounds familiar:

http://mssociety.ca/en/information/s...ng_uhthoff.htm

This is a symptom in MS that many of us get. It seems to fit.
ANN