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-   -   So COnfused (https://www.neurotalk.org/multiple-sclerosis/83338-confused.html)

craterhead 04-05-2009 10:01 AM

So COnfused
 
:confused: I had 2 mri's within 11 mos. the second showed 7 lesions mostly in the white matter. I used this forum actually to find information for placement. Thank you for that. Finally got to the "specialist". He claimed what the radologist saw what just an interpertation. As if we were discussing art. And what he saw was not there. I was corrected there are no such things as "lesions" they are merely shadows. People with ms I am told don't get headaches. Don't have tremors. Or petite mal seizures. I initially was told I have ms by another dr and then this Dr says you may, you may not. Even if you did I wouldn't treat it. What? So he ordered an mri of the spine. He remarked of my physical strength. Well I KEEP strong. This is frustrating to say the least. It took weeks to get an appt with this guy. He asked no medical history. Perhaps I should get a second opinion. I don't know. Does anyone have anything they can share as far as their own symptoms or side affects? Thanks so much. Stephanie

AfterMyNap 04-05-2009 10:10 AM

Hi, Craterhead ! :Wave-Hello: Welcome to NeuroTalk! I LOVE your moniker! :ROTFLMAO: :ROTFLMAO: :ROTFLMAO: :ROTFLMAO:

Dump that neuro and find a real one! MS symptoms are widely varied and all or none of yours could easily be MS. I don't like this guy's attitude, his need to play symantics with you is reason enough to move on to a second opinion.

FinLady 04-05-2009 10:46 AM

He was a specialist??? I've never been to a new neuro or specialist where we didn't review some med history. There are definitely leisons associated with MS, The dawson fingers effect is well documented. And pointed out to me by both my neuro and specialist. Plus all the studies that say the sooner you are on a treatment, the chance of slowing progression increases?? Find another for sure.

My first "can't be ignored" symptom was tremors. So yep, MS'ers can get those. My mom (who also had MS) had a few siezures associated with it.

My neuro is also constantly surprised by my strength in the exams, but I have a lot of other stuff I flunk. I just chalk it up to everyone is different.

Dejibo 04-05-2009 11:53 AM

Hi craterhead. welcome.

I have MS, and i have headaches! :cool:

I hope you get better answers soon. :hug:

SallyC 04-05-2009 12:02 PM

Welcome Craterhead..:D I'm glad you found us.

Yep, get yourself a better Neuro...This one sounds like he's the one who's confused...sheesh.:rolleyes:

I've not had tremors or seisures, but my MS is not your MS. And.....any kind of nerve pain and that includes headaches, can happen with MS.

DizzyLizzy 04-05-2009 01:06 PM

Stephanie,

I was just dx'd in January 09 and I am on my 3rd Neurologist since July of 2006. The first two were just not a fit for me, as I felt like I was just a "folder" in their files, not a human being with a heartbeat. I suggest that you post a thread asking for recommendations of a good Neuro in your area...that is what I did and that is how I found my 3rd Dr. (thanks again Polar Bear! :)) so keep looking until you find one that will explain things to you!

As far as being told that people with MS don't have tremors.....well that is not true! I have numbness, I have tremors and I also have headaches much more often than a couple of years ago. MS is not a "cookie cutter" disease, everyone is unique.

I know that you will find the "right one" too! Just don't give up and take the first interpretations as fact if you aren't comfortable with the Dr. You deserve to have your questions answered and your concerns addressed. Good luck to you!

dmplaura 04-05-2009 04:12 PM

My MS is driven by headaches... only they're not 'true' headaches.

My first symptoms of MS striking were likely when I had type 1 Trigeminal Neuralgia attacks several years ago.

PolarExpress 04-05-2009 04:33 PM

What Cindy said..Dump the neuro and find a real one..In fact, show him some of the comments you've gotten on this thread. He'll either decide to learn more about the disease he thinks he's talking about, or be a dead head forever (not the good kind :cool:)...:hug:

kicker 04-05-2009 05:22 PM

At the 5th MS specialist neuro I was very happy. But then he moved. Number 6 at beginning of May, wish me luck. On my MRIs, even I could see the lesions, so no question about it.

PolarExpress 04-06-2009 11:08 PM

Quote:

Originally Posted by kicker (Post 491744)
At the 5th MS specialist neuro I was very happy. But then he moved. Number 6 at beginning of May, wish me luck. On my MRIs, even I could see the lesions, so no question about it.

Always wishing you the best of luck, my dear Kicker!:hug:

NurseNancy 04-06-2009 11:26 PM

welcome to NT.

i have to agree. this "dr" sounds like a lunatic. i hate when drs write off your sx's. and, if a degreed MD radiologist says you have lesions i'd believe him.
you really need another opinion. and don't worry about how long you have to wait to see a real dr.

braingonebad 04-07-2009 09:53 AM

Quote:

Originally Posted by craterhead (Post 491567)
:confused: I had 2 mri's within 11 mos. the second showed 7 lesions mostly in the white matter. I used this forum actually to find information for placement. Thank you for that. Finally got to the "specialist". He claimed what the radologist saw what just an interpertation. As if we were discussing art. And what he saw was not there. I was corrected there are no such things as "lesions" they are merely shadows. People with ms I am told don't get headaches. Don't have tremors. Or petite mal seizures. I initially was told I have ms by another dr and then this Dr says you may, you may not. Even if you did I wouldn't treat it. What? So he ordered an mri of the spine. He remarked of my physical strength. Well I KEEP strong. This is frustrating to say the least. It took weeks to get an appt with this guy. He asked no medical history. Perhaps I should get a second opinion. I don't know. Does anyone have anything they can share as far as their own symptoms or side affects? Thanks so much. Stephanie


I'd like to tell that doc - And if you were on fire, I would not try to extinguish you.

He may or may not have a brain. Run, Stephanie, run.

If you watch Mystery DX, people all the time say "If you have to see 100 drs, that's what you do."

I sometimes feel it may take me 100 drs, but that does not make me prefer to settle for one that is not helping. There's no point in paying someone who is not doing everything he can to help me. That is a waste of time and money.

freeinhou 04-07-2009 06:24 PM

Quote:

Originally Posted by craterhead (Post 491567)
:confused: I had 2 mri's within 11 mos. the second showed 7 lesions mostly in the white matter. I used this forum actually to find information for placement. Thank you for that. Finally got to the "specialist". He claimed what the radologist saw what just an interpertation. As if we were discussing art. And what he saw was not there. I was corrected there are no such things as "lesions" they are merely shadows. People with ms I am told don't get headaches. Don't have tremors. Or petite mal seizures. I initially was told I have ms by another dr and then this Dr says you may, you may not. Even if you did I wouldn't treat it. What? So he ordered an mri of the spine. He remarked of my physical strength. Well I KEEP strong. This is frustrating to say the least. It took weeks to get an appt with this guy. He asked no medical history. Perhaps I should get a second opinion. I don't know. Does anyone have anything they can share as far as their own symptoms or side affects? Thanks so much. Stephanie

Steph -

First off, welcome to the board!

I was told I have MS in early 1988. Symptoms at time, among other things - severe back of neck pain. This finally went away in 2004.

First grand mal seizure - 2/93. Last seizure - 9/94.

First MRI - 3 lesions, 4/89 (there was a long waiting list back then for an MRI).

Last MRI - ~ 30 lesions in 2003. I don't need to know any more at this point.

Your doctor does not appear to understand MRI lesion distribution or presentation in MS patients. I would suggest a second opinion.

Side note - lesions do come and go. Your body is capable of healing itself. I got 15 years of MRI films... In my case - outright symptoms seem to come and go.

Lesion count (gray and not active or white (with contrast) active) really isn't an indication of where you might be with the disease. Location is probably a bigger player. As I understand it, 85% of people with MS aren't outwardly affected by the disease. I'm in this group, even after 21 years.

MS treatments - beer. bar-b-q, and coffee seem to work. I don't know about them crab's... Never been on one of them (ok - copaxone for a couple of months in 2003).

Tom

KajunButterfly 04-09-2009 12:45 PM

I have headaces, tremors, muscles spasms, weakness.....and the list goes on. Welcome to the board and find another doc!

sheena 04-12-2009 02:34 AM

Dump u nero - enough said - u got a very mad one


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