GUESS WHOS BACK?!

Hi all, I have not been here in a L O N G time. Kinda just gave up on getting dx. So many things have happened since I was last here. Husband and I have been seperated now for 2 years, went back to school a little over a year ago. I went for phlebotomy. Worked at a hospital for awhile, then go on with United Blood Services. Have actually felt pretty good for the last 2 years. Except for the fatigue and the aches and pains.
Well, I see my neuro once a year for check up. I missed a year......so now here I am. Had a horrible migraine. After it left, had the worse case of vertigo I have ever had. Saw my GP, and i had an appt with my neuro a few days later and almost didnt go. Thank God I did. He confirmed vertigo and told me to stay home another week. I said while off, I might as well do my yearly MRI especially since I didnt do it last year. Got the MRI done on a Friday. Tuesday his office called and said there were significant changes in the white matter of the brain and he wants to see you this afternoon.
OK........I went in and he read the MRI report ....lesion on front left lobe of brain (dont exactly remember the exact words) with presents of Dawsons Fingers common MS lesion.
That was 3 weeks ago. Since then, I have had VEP, LP,TCD, Cartiod Ultrasound, I think that is all. Point being, WOW, hes moving fast now. He always told me he felt in his heart taht I had MS, but could not dx because of no lesions.
I see him on the 7th for my results and dx.
So, finally, after 10 years, i may get dx'd. I dont WANT MS, just want a dx and lets start treating!!
So, I am back to hang out with you all again. Big waves, and hugs all around!! Wanted to let you all know where I was in all this. Also, wanted to be with all of you when I find out..................

[lilmissmedic]

Well I'm glad to see things are moving for you finally, that's great. Sorry you have had to endure soo much in the last few years to get here though.

I wonder though, how do you feel about this. I understanding not WANTING MS, but wanting to knw whats wrong once and for all. Do you feel upset though. that if they would have just listened or acted faster sooner, that you could have started treatment sooner and perhaps prevented the additional damage to your brain? I know that some of the treatments can have pretty awfull side effects so you need to be sure before exposing yourself to them,  but I feel that the damage that comes from multiple increasing lesions is pretty awfull as well.

So, i guess my question is, From someone finally coming out on the other side how do you feel about the delay in treatment in retrospect. I know you said that your doctor said he couldnt diagnose based on you having a negative MRI, but from what I have learned, that is not a requirement for MS diagnosis.

Your input would be greatly appreciated!!

- Kari

[Sidesteps]

Nikki,

I am a limbolander... one lesion in my periventricular area (nonspecific), some clinicals that have come then gone while some are lingering. What was your presenting symptoms that made you concerned with MS and what took so dang long?!?!

Thank you in advance,
~SS

[nikki861]

Well, I cant say how it feels yet. I see my neuro on Friday the 7th. I know I have been dealing with this for far too long!! I was always told I had to have a lesion show on MRI in order to be dx. I just pray either way this gives me answers. So, Kari, guess I will be better able to answer your question on Friday.

Beth

[nikki861]

my first sympton was I lost vision in my left eye. That was in 2001. That was the first mention of MS. Then, in 2007 I was barly able to walk. Had to use a cane, then a walker. My neuro did tests, MRI did not show lesions. Yet, I had many other symptoms. Always told could not dx, no lesions. So, this MRI, lit a fire under his butt. Because in the last 4 weeks I have been poked and probed. He wanted everything done like yesterday!! So, we will see on Friday what the outcome is.

BETH

[kerrtelli]

I gave more than 21 lesions and they still won't do anything.
No damsons fingers though.
I guess I'll have to wait like you.
I figure if it is ms like I think, the right lesions I'll show up eventually.

[nikki861]

WOW, 21 lesions and no dx. Do you have other symptoms? Over what period of time did it take 21 to show?

[kerrtelli]

Yes.  I have a lot of symptoms.  Mainly walking problems.
My legs are and I cannot move quickly at all.

I have mycologic jerks and awful muscle spasms.
My feet go numb, fatigue, cognitive issues.

You name it, I got it.

The first ms specialist I saw said I most probably had ms from the MRI reports.  But then when he had a spinal MRI done, there were no spinal lesions.  I also Hqve lesions on my Brian in the right spots but they are apparently not big enough to get q diagnosis.

I also had a normal LP and normal vep.

So now I wait.  He did say that he wanted to keep following me.  Whatever that means.

[kerrtelli]

Also, five years ago I had an MRI of the brain and i only had a few lesions.
Five years later i had some new lesions and flares in different places.
A couple of months after that I had another MRI of the brain and thats when I had more than 21 lesions but the report said "atypical for ms."

And that's that!

[Quixotic1]

Hi, there!  I'm back, too.

You know how angry I am at this waiting for lesions.  Weere you around when all the discussions about Clinically Isolated Lesions were repeatedly discussed?  With two classic clinical attacks you could have been placed on a DMD and the doc would have been well within the published guidelines.  Shame on him!!!  What a coward and a wus!

Well, clearly back then you had MS with no lesions.  Is it possible?  Of course it is and with the right clinical (history and physical) setting the neuro with cajones csn act.  I think I wouldn't be very forgiving.  All of this presumes the mimics are adequately ruled out.

Well, you belong here now for sure.  If you want more indignant spoutings just let me know.

Mama Quix

[nikki861]

yes, I was around, but everything I read and was told was that I had to have a lesion to be dx. I dont know weather to be releaved to mad when he does tell me.
From the research I have done in the last few weeks, I have seen that Dawson Fingers are a usual dx for MS. I had one person on another site tell me no, that is not the case. In any case, its been 10 years............what has happened to my body in those 10 years with out treatment. He said he could not treat for MS with out the lesion. The meds are toxic for the body and could have done harm if not MS.
Anyway, I will see what he says on Friday. Then I will be here for help on treatment options.
Quix, you go ahead and spout away my friend!!

BETH

[nikki861]

That is crazy!! you dont have to have spinal lesions to be dx!! I dont know what to think about all these doctors.........

Keep your spirits up and hang in there!!

[Tammy826]

I had over 20 lesions & negative spinal tap, went through 5 neuros, 3 MRI's , & 41/2 years until I finally found the right neuro & was finally diagnosed in August of this year. Its frustrating & at times I wanted to pull my hair out but hang in there!! If you don't feel comfortable with your present neuro search until you find one that wil listen to you!!! I wish I had found one sooner!! Now I am stuck with almost all the MS symptoms others have mentioned including headed for a wheelchair at breakneck speed! I feel if I had found a better neuro & started on a DMD sooner it would have at least postponed some of these awful symptoms!! Run don't walk to find someone who will not only listen but treat you!! Negative spinal tap does not mean you don't have MS. My neuro says there are no definative tests, they help diagnose but do not rule out MS. I also didn't have any spinal lesions although my MRI's were done on a 1.5 T machine. I started in 2007 with 8 or 9 lesions & now have over 20. I pray you get answers & treatment soon!! Best wishes!!

[Quixotic1]

Beth,

Without a characteristic attack, most neuros will not diagnose with a lesion.  However, the good ones will recognize the CIS - Clinically Isolated Syndrome and know that 1 out of ten people with a characteristic attack and no lesions will turn out to have MS within 5 years.  More if you wait longer.

It is a MYTH - a total myth - that taking a DMD if you don't have MS will harm the body - any more than it would harm (have side effects) for someone with MS.  Other than the financial harm.  One has to weigh the risks of having untreated MS versus taking a med that is not needed.

Man, Dawson's Fingers alone can't diagnose MS.  It is a diagnosis made primarily on the history and the physical exam, aided by the MRI and after all other "reasonable" mimics have been ruled out.  BUT, Dawson's Fingers is a HUGE, HUGE clue.

Quix

[nikki861]

Quix,

Thanks for clearing the DF issue for me. So, I am to assume that MS dx is coming. I am prepared either way.
The topic EQUIX THIS ? IS FOR YOU..........that was meant for you. Just fingers jumpimg around. Thanks

Beth