Dismissiveness

[LIW]

How many of us have been initially dismissed by neurologists who say our symptoms are:

[jibjen]

Hi,

I know..It's funny and I don't know who else may have done this in the past but whenever I went to my neuro appts. I would never talk about my odd symptoms I experienced because I was seeing him for migraines so I thought well what would leg cramps and fatigue and things like that have to do with migraines..I always stuck  talking with him about my migraines..never anything else I figured it didn't have anything to do with migraines and he was a migraine doc so why bother...I did tell him about when I satrted to have cognitive issues and visuual issues ....then when my last MRI came back with the findings I was the one that said i was researching my visual diturbances and cognitive ( I never knew my results until after the appointment)  stuff on the web and it brought me to an MS sight..I asked if he thought it could be MS? he said HMMM funny you should say that but I am not ready to do an LP???Don't get yourself in a tizzy he said I'll see you in 4months....and nothing elsenothing else..he did not tell me what my MRI report said (which I had to ask the receptionist for a copy on my own on the way out)  after I got that I reaearched my results myself..(how I found this website) i realized..wait a minute..I have had these other symptoms and learned about demyelinating meant ..When I went back for my follow up and tried to to bring it up he just says migraine...I never got the chance to tell him hey I have had this happen but never told you.......he asked me if I wanted to go off my migraine meds????never spoke aabout LP or other tests..... appointment lasted not even 5 mins. I feel like if I ever do get the chance to tell him he may be thinking I am "making it up" ..

I just want an answer and I am tired, literally, whether it IS MS or something else..just do some tests and talk to me.

Thanks for support and lending an ear..I want to talk to my PCP about another doc or have hime do my tests..I will show him my report...

Jib

[supo_uk]

Hi Jibjen

It seems we all have such similar stories, its really quite amazing. It is unfortunate that it falls to the patient in limbo to go throught their history but In my case this was the only way I began to get answers.

I want to help others. I hope I can prevent limbolanders from possibly suffering irreparable damage to their health whilst awaiting diagnosis.

x

[jibjen]

Hi supo_uk

And Thanks....I am glad to know that migraines can't cause demyelinating lesions...which means stop blaming my migraines.....I have symptoms that don't even correspond with them...I have an appoint. with PCP next Thursday..Can't wait..I am asking him to refer me to someone and start ruling things out for me.

It's actually sad I had to go through my report and learn about it on my own......I should have gone to med school...what really p*&$#@ me off is how much I spend for health care and don't get it.

;o) Thanks a bunch

[supo_uk]

Hi Jibjen

Well I am going to add my two cents.The following is very important:

*********You cannot make yourself demyelinate***************

Tell the neuro that calmly when they continue to be obstructive then dump him and find another neuro.

Also remind him that migraines do NOT cause demyelinating lesions-calmly.

Using the word 'suggestive' is them being ridiculous and trying to cover their b*tts. It is either demyelinating or it isn't...

Amazing how many of us are left to figure this out for ourselves when we are sick and tired, isn't it?

Good luck

[jibjen]

Hi  


I tried to teel my doc about it but I was shut down and told it was all migraine.

My MRI report stated possible demyelinating process and the lesions are located in supratentorial white matter, most predominantly in centrum semiovale and  high convexity subcortical white matter. (what does high convexity mean)

I have been trying to look these things up....

I am going to PCP next week for a discussion about who else to see.

Thanks for your support...alot of symptoms I never reported because i figured i was going for migraines but as they are occurring and learning more, I have been bringing them up and I feel like he thinks I am making it up....lesions don't lie do they..I actually discussed this before he even saw my MRI so how could I make it up ;o(

[MrsAristotle]

Good post to Jibjen, I agree she is being fobbed off and i would pay to see my notes without a doubt.