How confident is my MS specialist that I have MS?

[Fluffysmom]

His answer: "106%!"

I'll be starting on Avonex as soon as my starter kit is available, probably a couple weeks from now.  He told me today that he thought Avonex was a better choice for me than Copaxone, and explained why.  I had to agree.

We'll be following up every 12 weeks.  I was sent for baseline bloodwork and urinalysis today.

I'm kind of wiped out, but I had to come on and let you know that my MS neuro is definitely sure I have MS.

Talk to you later, my friends,

Kathy

[Nancy T]

I remember going to a public lecture by Dr. C. a long time ago (Tysabri had just been pulled from the market, whenever that was) and being struck with how convinced he seemed that there were a lot of undiagnosed MSers out there, especially in this corner of the country. He was starting this registry and seemed eager to get those people in, get 'em diagnosed and registered, and get them on steroids for every exacerbation. He seemed very big on the steroids. That's how I remember it, anyway.

Glad you found a doctor you're happy with!

[Eyesnlegs]

Better late than never - I haven't been around here much this week, but just noticed your post. Having recently been dx myself (June to be precise though it seems like yesterday) after a very long haul, I really do know how your feeling. I was relieved but still confused about some stiuff and needed to put all of the puzzle together. That will come with time, although I still keep finding some lost pieces - lol, but at least in the US you get some treatment unlike here.

Thinking of you now you are the other side of the mountain, as Laura said to me does the terrain look like you expected it to?

Take time, be good to yourself and be as well as you can be.

(((hugs)))
Pat x

[Guitar_grrrl]

I'm so glad you found a Neuro who listens and, well, thinks!!  I'm so sorry you have MS, but so glad you're able to get the DMDs you need.  I'm so glad you've chosen to eat healthy and get into the pool - we all need to take the best care of ourselves.

Wishing you good thoughts on this journey, good tunes, hugs,
Guitar_grrrl

[Fluffysmom]

I'm going to cal the office tomorrow to check on progress; see if they need the address of the pharmacy I'll be using, and see if they need any more information before we can set up my appointment with the nurse to show me how to use my starter kit.

Not much of my fat is on the top of my legs, so maybe it won't be so bad.  Whatever, it will be fine.

[Deb61]

I knew someone taking Avonex, and she used needles used by diabetics.  She's a nurse, and could do her shots herself.  She said that the tops of her legs is where she injected herself.  She wasn't tiny.  The tops of my legs is also pretty muscular, with little fat.  Even when I was 30 pounds heavier, I had trouble getting the skin fold needed for my sub-cutaneous shot from the tops of my legs for my Copaxone.  I had to go in at an angle to prevent going into the muscle.  Your Avonex nurse will help you with this.  Do you have any idea when you'll get your medicine?

[Fluffysmom]

Deb, I feel pretty good, though my emotions do change quite often.  I went to water aerobics, managed 45 mins. feeling great, Yay!  After I got home, I thought of all sorts of things to do, ate lunch for energy, did a few small chores, then popped some popcorn and watched the movie Marley and Me, and cried my eyes out; they are still red.  

I still want to get some stuff done, but a nap sounds really good about now, and my vision is blurry and my dizziness started gettting worse again in the pool; it had already started acting up, but now I need to do my vestibular PT exercises.

I'm so relieved to have a doctor understand and start treating me, worry about filling out the paperwork right, the 1 1/4 inch needles coming up.  Oh, he said I might need the longer needles since I'm overweight.  Lots of anxious thoughts, emotional ups and downs, but mostly good.

WAF,

Good question.  I don't have an official diagnosis in the sense of having fulfilled the McDonald Criteria, but it is still an official diagnosis in the sense that an excellent MS Specialist recognizes that I have MS, from the MS lesions in my brain and whatever else added up to a 106% confidence in his diagnosis of me.

I'm told that I'm officially booted out of Limboland, but since MS doesn't explain everything that's going on with me, I still have one toe across the border, lol.

I was actually ready to travel anywhere to find a good neurologist, when Quix suggested that I try to get in to see her neuro.  I got accepted as a patient, he took another job elsewhere, and I got to see the director of the clinic, who's truly amazing.

Honestly, I never felt like I was dying; maybe going crazy, or losing a part of myself, but I knew there would be someone that would truly look and see what's going on with me.

Did your neuro comment on your spinal MRI?  The radiologist that read my last spinal films said that I had several linear multisegment lesions in my c and t spine.  I got a second opinion, and that radiologist said there weren't any lesions.  My new MS Specialist showed me what it was that the first radiologist thought was lesions; a normal part of the spinal cord.  I definitely trust my 2nd opinion radiologist and my MS neuro.

I'm always curious about looking at MRIs, so I'll be glad to take a look at yours,  but the real answers need to come from a specialist.  

Thank you so much for the hugs and congratulations.  All this support is doing me a world of good.

Kathy

[MsWobbles]

I am so happy to hear your great news!!  Did he give you an official MS diagnosis or is it tentative???  

Are you officially out of Limboland???  I want Limboland to dry up and blow away - it's a horrible place!!

Anyway, how did you find your MS specialist???  

My symptoms are getting worse:  I feel so heavy - like I'm living on Jupiter, my arms are more involved now, and sometimes it is hard to get my legs to function. I feel like I'm stuffed with cotton.  I need help soon!!  I actually feel like I am dying - did you ever feel that way???  

What particularly upsets me is my spine MRI actually had numerous lesions visible and yet the radiologist report said there was nothing.  If I can figure out how to do so, maybe I will post it here (like you did yours) so others can see that I'm not just imagining things or making it up.

Hugs and congrats!

WAF

[Deb61]

How did I miss this email?  Wow!  I'm so happy your doctor figured out what was wrong and your treatment will be started soon.  

How are you feeling about all of this?  I remember my emotions changed from minute to minute after my diagnosis.  Mostly, I was relieved that my doctor figured out what was wrong and that I was going to start a treatment that would help.  However, I was quite anxious, too.  

[Fluffysmom]

Hi, Nancy!

I woke up with tremors in my head, neck and hands, which spread to my trunk and had me off-balance for several days.  I went to see my PCP, who sent me for a brain MRI.  The report said "far and away most likely to be multiple sclerosis".

That's how my journey started.

[Nancy T]

Hi Kathy--glad your expectations were fulfilled with this doctor. Hope all goes well from here. I can't remember, how did you come to suspect you had MS in the first place? (What symptoms, doctor suggested it...?)

Take it easy,

Nancy

[Udkas]

Hi there,
I am sorry to hear that you do indeed have MS but I also want to congratulate you on finding and neuro who cares and is able to diagnose you with confidence!  What a relief this must be.

No more asking is it, looking up mimics, questioning your own sanity etc. Just being able to accept what you have wrong and to deal with it.  I am sure it will come with mixed emotions but after all you have been through there must be some relief? Sorry you might never have questioned your sanity but I question mine sometimes seeing I am sort of in limbo.. but I do understand why I can't have a MS diagnosis.

You have been through so much to get a diagnosis.  I am happy for you, if that sounds like the right thing to say.  I hope your MS remains fairly benign. Thinking of you,
Udkas.

[Fluffysmom]

Ha, I got the scanner to work and posted a collage of some of my old mountain-climbing pictures!

Maybe I'll have to take a picture of my first Avonex injection as my next mountain-climbing picture....nah, just kidding!

[Lulu54]

Kathy,
This certainly is not a surprise to you, but I know all too well how this reality can suck the air out of the room for a while.  I'm so glad that you finally have the answers you need - you're right, it is time to move on.  

You like your new neuro, and you trust him... what a great combination.  

As Julie said already, you've joined us on the other side of this mountain - what a climb for you.

my best,
L

[sllowe]

Hey Kath,

Well it's about time, my gosh.
Hard to know what to say since this has been coming for so long.

Hope your soup was good and we'll be here w/you when you get those meds in hand  - hope the Avon-nurse doesn't mind we watch, you know watch over you..tee/hee

Seriously though, with you all the way for this next phase.

-shell :))

[Quixotic1]

nt = not tested.  They rarely test the Olfactory Nerve (sense of smell)

you did a good job of decyphering the rest.

Q

[rendean]

So glad you finally got an answer, not that the diagnosis is one that anyone would pick, but your perseverance paid off.  I'm so happy for you that the hunt is over and now you can turn your energies into taking care of yourself and enjoying life.

Welcome to the newbie club (forever in limboland has relinquished your membership.)

Huge hugs,
Ren

[michelleric]

Sorry for your diagnosis, but I am sure you feel some relief that after all this time, something was defined. I am thinking of you and it sounds like you have taken good care of yourself today.

Good luck with the Avonex, I hope it won't be too hard and I hope it slows things way down.

I am so glad you found a good neuro, he sounds like a compassionate, thorough doc. I am thinking of you today...
Lots of hugs,
Michelle

[Fluffysmom]

I was still writing when you posted.  Y'know, naughty Kathy feel like writing to the neuros and pointing out that there was indeed a forest in them thar trees, but I think it's time for me to move forward.

Woo hoo, I finally climbed over another mountain, and what a mountain it is.  Avonex will be interesting: I'm used to subcutaneous injections, so this will be a switch.

It think the switch from copax to Avonex was because Avonex has more evidence of slowing cognitive disability.  I suppose once he took an in-depth look at alllllll those lesions in my brain after interviewing me    "Attention:  Alert, cooperative, good comprehension, but loose train of thought and tangential..."  Want to keep my train on the tracks!

How I feel is kind of up and down; I'm glad to have a diagnosis, glad that my MS is relatively benign (tell THAT to my grey matter!), but still have bursts of anger for what I've been through, then the desire to leave the past in the past (my goal).

I feel like celebrating, but going to have a bowl of soup with my roommate where she works was  all the partying I could handle, then I was exhausted.  I want to eat healthy and take good care of my body, but wish I'd stopped on the way home for some frozen yogurt or See's chocolates.

I wonder about what else will be uncovered by this doctor that cares enough to look.

Kathy

[Fluffysmom]

Fluffy and I took a nice rest; he's still curled up on the bed.  I just wanted to get up and tell you all how much you mean to me.  I couldn't have made it this far if not for this wonderful Forum and the awesome support that I have received.  Your support and the richness of information kept me from being left out in the cold by my dismissive neuros.

I know that you'll help make this transition a relative piece of cake; I've already had some emotioal woopsy daisies.  Thank you for being here for me, and I'll try to return the favor.

I hope that all our limbolanders who've had bad experiences will take note: there are indeed good, nay great neurologists to be found!  I have truly found a treasure; someone that can see that I have MS although I also have non-specific lesions and don't fit the McDonald Criteria, and that I deserve treatment to slow or stop the progression of this MonSter!

So, it will be interesting to learn how to give myself this shot.  I have to read more about Avonex; I was all informed about copaxone.

I got some chart notes from my last visit; they are more like physician's notes that mostly he can understand, lol!  I'll ask for a copy of the letter he sends to my PCP.

So, I had a lot of exam results that were normal, and some that didn't appear to be.  I'll list those, so if anyone understands them, they can share their knowledge.

Cranial Nerves:

CN 1: nt   (I have no idea what nt means; since this is the sense of smell, for me it should mean "intense"; I could rival a bloodhound!)

CN II:  mild L ON pallor, with mild L APD (afferent pupillary defect; I looked it up)

CN III, IV, VI:  Course pursuit conjugate movements

CN VII:  SI flattening of L NLF (nasolabial fold?)

VIBRATION

Right Upper Extremity:  slight decrease distally
Right Lower Extremity:  distal decrease
Left Upper Extremity:  slight decrease distally
Left Lower Extremity:  distal decrease.

Everything is normal, reflexes 2+ throughout.  

Anything sound interesting?  Anyone know what the less obvious findings mean?  Ah, even while receiving answers, I still look to understand better what is going on with me.

Hugs to you all,

Kathy

[Sarahsmom46]

As Lu would say "welcome to our side of the mountain".  It has been a long journey for you and with lots of neuros who couldn't see the forest through the trees, but you finally made it.

So you will be injecting Avonex, eh.  I can imagine that you will be ok on whatever drug you try and I hope this one will fit your lifestyle well.  

How are you holding up after getting the 106% confidence dx from your doctor?

Love and hugs,

Julie

[Heather3418]

Dearheart,

You get some rest.  That's alot to disgest in one day, at the doctor's.  We are here for you Kathy, EVERY step of the way.  Please remember that.

My first Neuro 14 years ago, didn't say "106%," he said, "Classic, text-book MS."  I'm sorry that you had to hear the words, MS, at all, Kathy.  They didn't have things like MS Forums when alot of us were diagnosed....now there is the MedHelp MS Forum.  You have everyone on the Forum on your side, just waiting to help if they can.

We'll be here when you feel like talking...

Big Hugs Honey,
Heather  

[goofysmom1]

I am so glad that you finally have an answer and a plan!!!  I am interested in knowing how you feel once you start taking the Avonex.  

Rest up & fill us in when you are ready.

Hugs,
Chrisy

[Wobbly]

well rest up then Kathy... I'm glad you finally have answers and they are sure...you now know what you are up too...and need to rest up to allow this to sink in and learn on how to deal with thing... take care dear and talk soon

hugs
wobbly
dx