[Kitty]

Hi Chad and welcome to NeuroTalk.

What has your Neuro tested you for? I know it's frustrating to be in limbo. Lots of us here have been there at one time or another. Finding a good doctor is another hurdle. Have you tried to find a Neuro that specializes in MS? That might be a good starting point.

If you don't like the doctor you're seeing find another one. He works for you.....so if he's not giving you the care or attention you want and need fire him and get another one.

That's one thing I've learned since being diagnosed with MS. We have to take control of our healthcare and be our own advocate. You know yourself better than any doctor who's spent ten minutes with you. Good luck!

[SallyC]

Welcome Chad, nice to meet you.

I hope this new Neuro does a battery of tests to eventially give you A diagnosis. I don't think Docs/Neuros like to give a MS DX, because there is no cure and it's hard to pin it down, for sure..

Hang with us and we will try to help you through the process.

[Lady]

Welcome to all the new members. I'm glad you found us. I hope we can help with your basic questions. We are good listeners though. We have all been through the diagnosing process and it is hard and time consuming, and yes costly.

Nice to meet all of you.

[chadc870]

Originally Posted by Kitty

Hi Chad and welcome to NeuroTalk.

What has your Neuro tested you for? I know it's frustrating to be in limbo. Lots of us here have been there at one time or another. Finding a good doctor is another hurdle. Have you tried to find a Neuro that specializes in MS? That might be a good starting point.

If you don't like the doctor you're seeing find another one. He works for you.....so if he's not giving you the care or attention you want and need fire him and get another one.

That's one thing I've learned since being diagnosed with MS. We have to take control of our healthcare and be our own advocate. You know yourself better than any doctor who's spent ten minutes with you. Good luck!

hello kitty,
thanks for the reply!
first off let me say that it is one of the most frustrating things to try and get people to understand what you are going through and ALL of them including some family think you are faking an illness.
my last mri of my brain was done with ans without contrast and it came back saying:
scattered nonspecific punctate t2 and flair hyperintensities within the supratentorial white matter of both cerebral hemispheres, findings associated with no surrounding edema, mass effect or abnormal enhancement. this may result to gliosis from previous traumatic infectious/inflammatory or vascular events. similar changes can be seen transiently in patients with migraine headaches. demyelinating process such as multiple sclerosis is not entirely excluded. neoplasm is felt to be unlikely follow-up mri in 3 to 6 months.

now i really don't know what that means and no one has explained it to me but when i seen the first neuro i filled out 9 pages of questions about my history and guess what they sat behing the doctor the whole time and he never bothered to look at them, this doctor was from florida and came here to arkansas his name was gotfried jean-louis first off he was french and i just couldn't understand him. the only tests he did on me that day was he checked my reflexes and checked to see if i could feel this vibrating thing on my feet, i told him at that time i wasn't having any feet problems. then the only other thing he did wasask me how many fingers i saw him holding in my peripheral vision, he automatically said i have the "migraine gene" i have no family history of migraines and i have never had them before. i did a little research and found that there is a such thing as a migraine gene however it still is so newly found they cannot diagnose you with it by looking at you. I was so frustrated when i was telling him all the things wrong with me and he either didnt listen or didnt care. at the time i was taking hydrocodone for my migraines/and or the constant headache i had in between migraines, he tells me to quit taking them and then told him about my jaw pain when i chew it shoots a pain into my left ear and does to this day he told me to go see a dentist, as far as the spactisity i get in my hands and feet and i mean my fingers will draw up in a major cramp and my feet have cramped so bad it has woke me up many of nights, he told me spactisity isnt associated with ms. i also told him i CANNOT be in or around any heat or i get the whole body shakes something bad, so he tells me to use a heating pad on the base of my skull( i guess he wasn't listening) when told about the twitching i get pretty regular he didn't say one word. i told him sometimes i see spots floating around out of my left eye which went blurry for a long time now and sometimes i see what looks like car lights passing by but there is no cars and all he could tell me was to get a hobby. when i asked him if he thought it could be ms he proceeded to look at only 1 of the pictures on my mri and showed me this one area(and again dont know what i was looking at) and he told me that ms would only appear here. i'm not a doctor but i have to disagree with what he just told me, one last thing i told him was my memory and thoughts are really messed up, i used to do a lot of work with computers and now have trouble remembering where certain keys are and i have to ask a lot of times in the middle of a conversation-what was i talking about, and he wasnt even concerned about that! so once again i have to self pay everything (medicaid/medicare pending) and he cost quite a bit of money for absolutely nothing, the only thing he did change was he took me off norvasc for my bp and put me proprananol as he said it would help with my pain, the pharmacist was wondering why he would tell me that as she said there really isn't any pain properties in it. the only problem with me is i am living on my retirement and i am running out fastly and cannot afford to keep getting doctors/specialist like that. i am going to a neuro that specializes in ms on wednesday so hopefully i am going to keep my fingers crossed. my gp has run so many blood and urine test i could turn blue but she wanted to rule everything out. she is the 4th doctor i had went to and she really does care she said we will not let one stone be unturned. i just wish and this is my opinion that doctors and specialist would go back to the oath help now worry about money later but i guess those days are gone.

[chadc870]

Originally Posted by SallyC

Welcome Chad, nice to meet you.

I hope this new Neuro does a battery of tests to eventially give you A diagnosis. I don't think Docs/Neuros like to give a MS DX, because there is no cure and it's hard to pin it down, for sure..

Hang with us and we will try to help you through the process.

thank you sally, i hope this appt goes better than the last.

[chadc870]

Originally Posted by Kitty

Hi Chad and welcome to NeuroTalk.

What has your Neuro tested you for? I know it's frustrating to be in limbo. Lots of us here have been there at one time or another. Finding a good doctor is another hurdle. Have you tried to find a Neuro that specializes in MS? That might be a good starting point.

If you don't like the doctor you're seeing find another one. He works for you.....so if he's not giving you the care or attention you want and need fire him and get another one.

That's one thing I've learned since being diagnosed with MS. We have to take control of our healthcare and be our own advocate. You know yourself better than any doctor who's spent ten minutes with you. Good luck!

in addition to eveything else the night sweats have returned and no doctor to date can give me an explaination, i will wake up 2 to 3 times a night soaked as if i took a shower i have no fever when this happens i just have to change clothes, sheets and i have 3 different pillows to switch out with each and every time, when i finally do get up i know its going to be a bad day as it makes me feel drained i get insombnia quite often also, and now my ibs is flaring up, it hasn't for a month or so but now it had been alternating between "D" and "C".

[mrsD]

Chad, I can't help but wonder if you have been evaluated for
Lyme disease. Night sweats are a sure sign of infection of some kind. Lyme does go into the brain, and is called neuroLyme when that happens.

Also low blood sugar will cause night sweats like that.

[Kitty]

Chad, here is a link to the forum that discusses Lyme. http://neurotalk.psychcentral.com/forum91.html. You might find information there that is similar to your symptoms. I'd definitely have them test for Lyme next time you see the doctor.

You're paying for the tests and the consultation....let them know exactly what you want and don't accept less.

Sometimes we have to go through several doctors to find a "keeper". It's frustrating but a good relationship with your doctor is so important. Good luck to you.

[chadc870]

Originally Posted by mrsD

Chad, I can't help but wonder if you have been evaluated for
Lyme disease. Night sweats are a sure sign of infection of some kind. Lyme does go into the brain, and is called neuroLyme when that happens.

Also low blood sugar will cause night sweats like that.

my blood sugar was fine and i was tested for lyme, chrohns, celiac and a gob of other things my last blood/24 hr urine test keeps saying my ephinepherine level is high and she has no explaination for it, and of course my cholesterol is high so my gp is baffled at this point.

[chadc870]

Originally Posted by mrsD

Chad, I can't help but wonder if you have been evaluated for
Lyme disease. Night sweats are a sure sign of infection of some kind. Lyme does go into the brain, and is called neuroLyme when that happens.

Also low blood sugar will cause night sweats like that.

about 9 years or so ago i had a severe case of mono which i wouldn't wish on my worst enemy! i wonder if it has something to do with my condition even though my last neuro wasn't concerned with it.