MS Specialist, Probably MS

[tyler175]

Hi All

I do not know if i have finally been diagnosed or not, I saw the MS specialist yesterday was there for a little over three hours,

He asked me so many questions and did a full Neuro exam, provoked something or the other which was positive,

He went over my MRI and MRA's with me plus all the other tests i had done,

He wants me to have another 5 days of IV's at a higher dose than i had last time which was 500mg, as my symptoms are coming back slowly,

Then he said this is most probably MS, and said after i have the next round of Solu-Medrol he would like to start me on another drug which i have to inject

I have to go to the office on Monday and pick up his report, as most of what he told me went right over my head,

Even after i asked him to tell me in plain English, what he thought i had, most of the words were medical and beyond my understanding,

I have another appointment with him in 2 weeks, to be shown how to give myself shots

But i still am not sure if i have been diagnosed, is PROBABLY a diagnosis or a maybe I am more confused than ever,

Thanks

Tyler

[tarter]

To  tyler

I always forget what the neuro says and sometimes i could kick myself for not asking the right questions and of course if your having a bad day memory, brain fog and speech.

You mention balance and walking into things that and my vision were the first I had thought i had a brain tumour it felt so weird.

I am not diagnosied yet but my own GP thought MS three yrs ago and now neuro last week said he thinks it could be having ruled out mimics he has witnessd by slurred speech and that changed things also neuro exam reveiled weakness in left side.

I have scan next week so we wil see if anthing has changed.
Do you suffer with burning toes?

Everyone has the same symtoms like the buzzing i was so releived to hear others talk of it thought i was going crazy!

tyler I would keep positive some times this desease can changed or be less active,

Great speaking with you Hugs tarter

[tyler175]

My first symptoms were feeling off balance and vision problems, the balance gradually got worse, until some day's i could not walk without crashing into walls, or anything else that was in my way,

Yes i have continuous symptoms since march, that have only gotten worse, until i had the solu-medrol just before Christmas. that helped somewhat, but my symptoms are starting to reappear at an alarming rate,

Yes i could really kick myself for not taking notes at my MS Specialist visit, i usually bring a small tape recorder with me, this time i forgot it, it fits in my pocket, so that the doc does not know i am recording it, this is only for my benefit when i get home i can go back over what was said, i was totally brain dead on this visit

I am still struggling with the anger and self pity right now, but all you guys are great, and i know I can come to this board, and there is somebody who will listen or have an answer

Have you been diagnosed yet ??

Hugs

Tyler

[tarter]

Hi tyler sorry to hear the Neuro thinks its a progressive form of MS.
Have you had continuous bad flares since march?
I read 20 yrs ago you had a flare I wondered when did you first notice it reappearing ie what were your first symtoms?

The MRI I am confused about my Neuro told me last week that PPMS sometimes did not show leisions sometimes.

How are you feeling I guess you hvent had much sleep your mind must be working over time. Thre are always so many questions you wish you had asked when you come away from appt, But may be next visit you may be given more time for questions.

tyler I really hope that you get lots of time in a good period without too much discomfort. I will watch for your questions to Quix and Lulu and keep fingers crossed for better times for you.

Warmest Wishers tarter  

[tyler175]

Would you believe i already sent a copy of some of the DUMB and STUPID to my first neurologist i just could not resist, yes he was a real jerk,

Now i am gonna mail him just a little bit more ha ha

The caramel and Ice cream, sounds too good lol where do you live

Tyler

[Quixotic1]

Pity Party Time!!!

I'll bring the caramels and ice cream!

No, honey, the tears will come and go and appear at all sorts of times.  You cry as much as you need to, but remember this isn't going to kill you.  I can't say wonderful things about the disease, but we will all make it through!  I still feel sorry for myself sometimes.  This whole thing s*cks!

You will be okay, how is hubby doing?

Other people will be by to discuss choosing a med.

One thing that helps with this news is anger.  Your first neuro was a real zinger as I remember.  Maybe this is time to copy off the DUMB and STUPID and the Appendage Drop-off Syndrome and send it to him with your "wishes".  I do think docs should get feedback.

[[[[[[[[[[HUGE HUGS HERE]]]]]]]]]]

We all take care of ech other!

Mama Quix

[Lulu54]

Tyler,

this is a great night to hold a pity party - have a drink or two and settle in for the evening, if that fits your style.  I know I had quite the pity party for myself when I was first dx'd and added a few extra G&T's to go with it.

you have already been living with this for quite some time ..... that should let you know that this dx of MS is not a life ending thing or often it isn't even life altering.  

Let go of the tears and cry all you want - we've all been there and done that.  Believe it or not, the emotions become more manageable with time .  

As Quix said, we are here for you - when you are ready to discuss DMD's we will be happy to share our own experiences.  For now, just take some time to be kind to yourself and let this sink in.

Tomorrow is another day and a new year!

lots of hugs to you,
Lulu

[tyler175]

Hi Quixotic

Thanks for your answer, I think he is going to let me choose my meds, he mentioned a couple of them, but i cannot remember what they were, i will know when i pick up his report on Monday

Right now i feel very Angry, confused and probably not really taking it all in, i really believed in my heart that this was going to be something simple that they could treat and be done with, I guess i have been in denial, and probably will be for sometime,

Thank you so much you guys really are great and no doubt yes i will have many more questions, and worries and concerns,

I would really like to know if given the choice of meds, which one i should go for, i guess the drugs used in MS are limited, is that right, ?

Better get off of here for a minute i am starting to cry again, i think i am going through a self pity minute

Thanks

Hugs
Tyler

[tyler175]

Hi Lulu

After taking a very detailed medical history, seems like i had similar symptoms about 20 years ago, though my recollection of it is very vague,

And as i have had the current symptoms since march with new ones added or old ones getting worse, each week, he mentioned something about secondary Progressive, i will have to look that one up, then was rambling on and on, with stuff that i had no clue what he was talking about,

He showed me the MRI and counted over 60 lesions, all over the brain which he then pointed out was unusual, and went on about Smokers, Diabetes, and old age, I told him no I have never smoked, and am not that old, though i feel like 90, and am not diabetic, and then he pointed to a large lesion that he said was i think he said dawson's fingers or something,

No he did not mention which drug well he did but he mentioned a couple of them, but i cannot for the life of me remember what they were, it should be in the report that i pick up on monday

He wants me to start on the Solu-Medrol on Monday for 5 days at a thousand mg over 1 hour,

the the following week to go back to office and be taught to how give myself shots

So I am not sure if he gave me the diagnosis of MS or just Maybe,

Yeah it sure ***** starting off the new year like this, but it probably better to  kinda know and not have to go through another bunch of tests,

I will keep you all informed about what drugs he wants me to be on, as i am not sure if i want them until i know a little more about the side affects etc,
Thanks
Tyler

[Quixotic1]

Hi, and Welcome to the Other Side of the Mountain.  Feels Weird, eh?  Yes, I agree with Lulu that he has either diagnosed you, but it isn't a "slam dunk" (it rarely is) or you have a Clinically Isolated Syndrome that is far more likely than anything else to be MS.  This would put you at about a 90% chance of showing all the signs of MS later.

I also agree that his wanting to treat you with a DMD and with the higher dose of steroids means he is pretty convinced.  Are you to choose your med or does he have one that he wants you to take?

How are you feeling?  Weird?  Reeling?  Numb?  Angry?  Relieved?  All of those and more are normal feelings after a diagnosis.  And many people bounce back and forth between opposite feelings minute to minute.

Now, this is when you have a whole new set of questions and concerns.  Remember we are your family 24/7 for all of this.  We can help through all the big and little things.

Stay with us and share what you are going through.  I'm sorry that this is happening, but you already knew something was wrong.  Now, you just have a name for the enemy - and can look ahead.  For me the diagnosis was far easier than not knowing!

(((HUGS)))

Quix

Now go to this thread and join the ranks of The Diagnosed

http://www.medhelp.org/posts/Multiple-Sclerosis/Who-is-Diagnosed/show/697976

[Lulu54]

Hi Tyler, first let me tell you how sorry I am you are probably joining our ranks as dx'd with MS.  I think from all he has said, you are getting that diagnosis.  OR he could be treating you as a case of CIS (clinically isolated syndrome)  with the strong possibility of turning into MS later on.

Having him tell you that he wants to start you on disease modifying therapy is a serious step for the neuros - they don't do that without pretty strong evidence.

Did he tell you which drug he recommends?  I hope that you have the chance to learn more about them before your next appt.  

What a way to start the new year, huh?  

my best,
Lulu