Saw the Neuro Today

[Cosmobirdy]

Hi all...

I first posted a couple of weeks ago when I initially found this wonderful group.  You welcomed me so kindly, and I've been reading and learning since then... :)  I saw the neuro today for the first time and just thought I'd fill you in.

I am so fortunate - I REALLY like him!  After the bad experiences with the cardios, I had been worried.  He is kind and thoughtful and laid back and listens.  Hooray!  He looked at my timeline (that I made thanks to you guys!) and my MRI films (not just the report), and went thru all the other test reports that I brought.  He asked me lots of questions and you could tell he was putting it all together.  Then he did his neuro exam with the reflexes and all the other stuff.  Then he looked at me and calmly said "I think we're looking at MS here."  He is going to do a ton more blood work to rule out other stuff, but he feels it will all be normal.  I have to get an MRI of my C and T spine, and possibly a sleep study - but he really feels the crazy fatigue is due to MS.  He said to prepare myself cause I'm probably looking at a lumbar puncture in my near future, too.  Oh joy, lol.  

So, in a sense it's a relief to know I'm really not crazy or lazy.... :)  Now all the things that didn't seem to connect really do - the memory problems, chest pressure, tingling in various areas, sometimes tripping for no reason, not being able to find the right words sometimes and using totally wrong ones, unbelievable fatigue... you name it.  He didn't hesitate when I asked him if he had an idea what was going on, nor did he give me a differential.  Just feels it's probably MS, period.  Being in the medical field, I know that usually they hem and haw around on a first appt especially, and even if they give you a clue, it's tempered with about 5 other possibilities.  No such luck.. :)  He said on his exam my right side was clumsy and that the reflexes were different between right and left.  He's trying me on Provigil for the fatigue, which hopefully I can get tomorrow - the insurance wants to pre-authorize it.  Sigh.  Anything I should be aware of when I start that?  Has it helped any of you with the fatigue?  

Sorry this was so long, but I am so comforted by this community and the help and support and info you all provide.  I guess I'll be hanging around here after all... :)

Rita

[Sonaya]

Hi Rita,
Its a huge roller coaster of emotions when you are told it looks like its MS.

I went from being told I might have had a brain hemorrage, to a stroke, then to angina, then to MS, then to familial hemeplegic migraine , then lupus and now the latest thing is possibly a form of epilepsy/seizures?

These suggested so called likely diagnoses from my own docotor and physicians have sent me off in a spin of which many many tests have so far shown nothing.

I had 2 doctors tell me it sounds like MS but as soon as the MRI and LP tests all came back normal they changed their minds.

Ive gone through all the emotions of feeling relief that I might finally have a diagnosis but then to have it taken away and then left in limbo again, then it changing again, etc etc and so forth and just when I think ive found an answer and my doctors agree that its perhaps just this form of migraine, they go and change their minds again.  

Im sharing this because the difference I think with your wonderful neuro is he seems to be fairly certain.  And I know you are in the first stages of all the testing, however he is at least acknowledging there is something wrong and your not going crazy.  That is a huge relief in itself just to have this support.  He is even acknowledging your fatigue and helping you with that immediately.  I think that is fantastic.

You hold on to this neuro he sounds brilliant.

Let us know when your appts are.  And please dont worry about the spinal tap.  IF you have to have one, many of us here have had one and can tell you what to expect its really a very quick procedure.

Heres a bit of contradiction for you......I really do hope you don't have MS but at the same time if you do, I am so pleased you finally have your answers and it puts an end to the limbo land self doubt crazyness of it all...(if you know what I mean ;)  )
Take care
Sonaya

[Cosmobirdy]

I haven't been started on any meds yet, as far as the DMD's.  I am going to start Provigil as soon as I get the insurance to approve and get it filled - hopefully today and I can start tomorrow.  If I can get a handle on the fatigue, that alone will make a world of difference for me right now.  They are trying to get my C and T spine MRI scheduled, hopefully that will be in the next week or two.  I will get the blood work tomorrow - LOTS of different things he's running.  Then I go back to see him probably in a couple or 3 weeks.  I have a sick feeling that I will then be looking at the spinal tap.  Have you had to have one of those?  How long have you been having symptoms, and what kind of symptoms have you had?  I don't think it has really all sunk in yet for me - well, I know it hasn't... :)  I'm still at the first stage...relief that I'm really not going crazy and that all the weird things all finally add up.  There is much for me to learn now...

Rita  

[LATW]

YOUR APPOINTMENT SOUNDS A LOT LIKE MINE!  I GO FOR MY T-SPINE IN TWO WEEKS.  THEY DID SOME BLOOD WORK YESTERDAY. MY HEAD IS SPINNING TODAY TRYING TO LET THIS SINK IN.

WE KNOW SOMETHING IS WRONG AND WANT TO KNOW, BUT THE ANSWER IS STILL DIFFICULT. ARE YOU STARTING MEDS?


LA

[Cosmobirdy]

Hi, and thank you for your input... :)  It makes all the difference to me to hear personal experiences with meds and symptoms and treatments.  I still like to read the informational sites and will continue to do so, but the personal input is what puts it all in perspective.  As far as naps, I've never taken so many or WANTED so many in my life!  I will be careful to not let the Provigil replace those - I appreciate the tip.  I know alot of this is now going to be trial and error and seeing how things go for me and my body.  Maggie, thank you for the prayers and kind words.  I am sorry you are still in limbo at this point - how long have you been having symptoms?  I wish I could send you my neuro... :)  

Rita

[Cosmobirdy]

Great tips on the Provigil - I will definitely try the half tabs at first.  Don't need to be up all nite...   Actually, I've been up since about 3AM today, giving me a grand total of 3 hours' sleep.  I can't seem to shut off my brain right now.  Can't imagine why.... :)  I can understand about your jubilation at finally having a diagnosis.  From what I've read here so far, you traveled a long, hard road to get there.  You and everyone else here are so strong and resiliant - you set a wonderful example for the rest of us.  I will try to brace myself for the "bloom to be off the rose" (what a great way to put it!) when this all really sinks in.  I'm sure I will get good and pissed off at some point also - it's great to know the folks here will understand that as well.  BTW, love the term "zipperosity"!  I tend to modify words to my own needs, too.... :)  

Rita

[LLWB]

I'm not diagnosed, but just wanted to congratulate you on finding such a good neuro. One who was willing to listen, actually look at MRI'S, and put things together. There are many people on this forum that will be able to help guide you through this. I know from reading every night, than no question is too small or unimportant to ask. Might take a little time for an answer, but someone is usually hanging around most of the time. God Bless you, stay strong. My prayers are with you..............Maggie

[mae1]

I have to agree with Quix, My experience with the Provigil was to start with a 1/2 a pill and work my way up. I am also careful to not use the med inplace of my naps when I can get them in. naps help me more than anything.......
everyone is different, I hope it works for you.
good luck.
april

[Quixotic1]

The Provigil is usually in 200mg tabs.  I recommend 3 or 4 days on ONE HALF tab.  I would never take a second later, personally.  I have taken 1 and 1/2 all at once on days that I really need the zipperosity.  Taking the med after lunch is a guarantee for me of terminal "Bright Eye."  You'll have to see how you respond.

Honesty, I was so jubilant after my diagnosis, that if my sister had not been in the ICU with cerebral edema caused by a series of negligent doctors and nurses, we would have had a Diagnosis Party.  A few weeks later, though, the bloom was off the rose, and I was pissed off.

Q

[Cosmobirdy]

Thank you for your answers and compassion.... :)  Now I get the difference between a relapse and an exacerbation!  I was kinda hazy on that one.  I do know you guys aren't giving medical advice, but the personal experiences and support are what is so awesome here.  Especially since MS varies so much from person to person.  It helps alot to know there are others here who have walked thru all this already, and can listen and advise on things like what I will go thru now emotionally.  I am honored to be part of this family.... :)

Rita

[Cosmobirdy]

Thank you for your post - I have read so many of yours already and I truly appreciate your input and expertise... :)  And you're correct - I am reeling right now and it hasn't all sunk in yet.  I have been thru some very difficult times in my life (my divorce seemed to have brought the same end results as yours - I was so sorry you went thru all that too), as well as other major things, and I don't go down easily or quietly, lol.  I'm one of those people who does much better once I have the facts and know what I'm up against.  I know I will pass thru alot of different feelings as I absorb all this as more of a certainty than just a vague possibility.

The neuro did not discuss DMD's yet - I think he's waiting for the last bits of info from the remaining tests.  But he didn't seem tentative in his thoughts at all.  Thank you for the pep talk about the spinal tap.  He's going to have me get it done at the hospital if I need it, so they can do it under flouro.  The nice thing about that is that I already know some of the radiologists.

Thanks for the input on Provigil, especially the caution not to overdo it just because I feel zippier.  Hmmm.... have you talked to my friends and family or something? LOL!  He had already told me to start with only one and see how it goes, and then if I find I need more can take a 2nd one later in the day - but never after 4 PM.  He is having me start by trying it first thing in the morning, since I wake up fatigued.  I hope it will make a difference and make me feel more normal.  Well, OK, I"ve probably never really been normal.... :)

I'm sure I'll pick your brain more in the days to come... thank you for being here and sharing your knowledge....

Rita  

[Heather3418]

Let me try to answer some of the questions you asked before...

With the DMD's you need to take them whether you are having any symptoms or not.  Like ess said, MS is ALWAYS active, whether you are having any symptoms or not.  Kind of like high blood pressure.  Relapses and Flair-ups are basically the same puppy.  You ask about warnings that you are starting into an attack....If you already have current symptoms that have stuck around, you will have a worsening of symptoms.  You may have very increased fatgiue, much more pain, vision changes, cognitive issues. i.e., such as remembering things, having trouble finding words you want to use in a sentence, slurred speech, heaviness in your legs, spasms or an increase in spasms, tingling and numbness....it can run the rull spectrum, depending on how your course of MS runs.  You may have increased sensitivity to heat, also.  Your symptoms will last more than 24-48 hours.  If you have fleeting symptoms or symptoms that last less than 24 hours, this is called an exacerbation.  It will go away when the offending "thing" is removed, such as being over-tired or over heated.

I know you will have questions and we will be glad to answer them if we can.  Remember we are not doctor's only people that suffer from MS, so we can only go on our own experiences with this disease.  The DMD's are also known to help prevent what is called brain atrophy, where you actually will develop a shrinkage in your brain, from repeated damage from MS, or black holes.  Where brain tissue has been so damaged by MS that the cells die.  DMD are best for preventing these problems.  That is one reason that I am determined to stay on my Copaxone.  I want to do everything possible to help prevent relapses and brain atrophy.  Will the DMD's stop your symptoms or improve the ones you have, NO.  It's not that kind of medication.  Hopefully a medication for those problems is on the horizon.

Hang in there sweetheart.  You will never take a step alone, as long as this forum exists.  That's a promise.  We are with you through all of this.  When you go through your anger and grief period we will be there too.  And yes, Rita, you WILL go through that.  I believe each one of us that have been through the definite diagnosis of MS can say that we went through a grief process after the diagnosis part sunk in.  We are here for you through all of it.....

BIG ((((HUGS)))) honey and much love and support,
Heather

[Quixotic1]

Wow!  What a wonderful visit and the Neuro of our dreams!  You accomplished exactly what you needed and have an ally to see you through it.  In that way I am very pleased for you.  Exile in Limboland is over and I personally know what a relief that is.  Still, everything changes when you get that diagnosis.  Your head is likely reeling right now and you'll go through a variety of emotions.  Ess said something very important a little while ago to a new diagnosee.  You'll likely deal with this similarly to the way you have handled other "hard-to-take" news.

Uh, your post wasn't long at all.  Have you seen some of mine or Rena's, lol.  More is better than less.  It's one reason we seem a real family/community and not just an FAQ site.

I looked back at your previous posts and see that I never did respond to you.  I am so sorry.  I always meant to, but I do get behind.  I see, though, that my wonderful friends here gave you great support, information and encouragement to look further.  We never need to be satsified with inadequate care.  There are great doctors out there and we sometimes have to turn the merchandise to find them.  As the saying goes, " You have to kiss a lot of frogs before you find your prince."

Don't worry about the spinal tap.  They usually go quite well, but sometimes there is a headache.  If you get one, it will pass.  Did he discuss the DMD's or did he want a little more info first?

I take Provigil and it is a life-saver for me.  Without it I could not be on this forum!  It is a mental stimulant and is used for things like narcolepsy, Shift Work fatigue, adult ADD, and very successfully in MS.  I have three pieces of advice to you about it.  First start at half the dose for a few days.  Sometimes, people get jittery and too stimulated if they start on the full dose.  Second, take it very early in the morning so it really has worn off by bedtime.

Third - this deserves its own paragraph.  Because it feels like the best energy you have had in a long time, you will be tempted to pretend that everything is normal and overdo your activity.  This is probably inevitable, but try to scale back on what you do and work up.  If you overdo you may "crash" and pay a price for a day or two.  You'll eventually learn what your tolerance is and not have ups and downs.

Finally, you have a whole new experience ahead of you and that's what we're here for.  Ask away and join our family as you already have.  I'm glad your visit was as good as it was.  Having trust in your doctor is one of the finest supports you could possible have going through this disease.

Quix

[Cosmobirdy]

Thanks for the info on the drugs and helpful sites to start searching.  I know I have alot of research and reading to do... :)  I didn't realize that you should go on meds once there is a definite diagnosis, even if symptoms aren't too bad right then - but it makes perfect sense once you explained it.  I have much to learn... :)  This group is priceless in so many ways, and I continue to be awed by your collective knowledge and insight.... and your compassion and kindness to those of us who are new and clueless.

Rita

[Cosmobirdy]

Yes, I actually am relieved to finally know what's going on, if that makes any sense.  It's certainly not what I had wanted to hear, believe me....I had been hoping there would be some other, more harmless answer.  But I had truly begun to feel that I was losing my mind... becoming some kind of weird hypochondriac who couldn't even stay with the same symptoms to complain about.  I felt like I was becoming lazy, because I just have no real energy most of the time.  I wake up tired most of the time, no matter how much sleep I have gotten.  The memory problems have been so frustrating, and I think some people have thought I just don't pay attention and that's why I forget so easily.  I'm one of those people who can handle almost anything, as long as I know what I'm up against.  It's the limbo that was so hard.... And I know that I found a good doc, so if I have to have something like this, I have someone I can feel comfortable with and trust.  That's a relief, too, actually.  So now I will educate myself on this and do what ever it is I will need to do.  I don't go down easy..... :)  I'm sure I will come to you guys with dumb questions and fears - I'll try to reign it in...  All in all, I choose to focus on the positives - I'm getting to the bottom of things, I have found a good doc and I KNOW how hard that is, I have wonderfully supportive friends and family, my hubby right beside me, and now I found this awesome community.  Thank you all.... :)

Rita  

[essdipity]

There are at least 4 disease modifying drugs for relapsing-remitting MS. I suggest you go to the National MS Society web site and read up on these, and also follow various links you will find. Nothing is perfect, and all of these meds have side effects. Most people can tolerate them quite well, at least after adjusting to them. I'm about to start on Copaxone myself.

You do need to take one of these if you get an MS diagnosis. The disease is at work all the time, and the idea is to keep flares to a minimum. It's impossible to say to what extent any individual's disease will be relieved or modified, but statistically they do work, and they're our best hope. Not acting could ultimately result in permanent disability, which of course could occur anyway, but we have to do out best for ourselves.

I suggest you spend a lot of time on the Web, everything from Wikipedia to official sites such as WebMD and government NIS information. Steer clear of those with something to sell or which offer 'natural' remedies. There ain't no such animal.

Please keep posting here and we'll do our best for you. I'm sure no expert, but collectively we have a lot of wise heads here. I found this site because it kept turning up in answer to Google queries. For a good while I thought it might be just one of those whiny places that are no help, but when answer upon answer here was right on target, I realized how great this forum really is. As the song goes (or used to go), I'm a believer.

ess

[Cosmobirdy]

OK, thank you!  Guess I should have figured that out myself, huh? :)  So what types of drugs do they use?  Would I need to go on something like that even if I'm not having really bad or debilitating symptoms?  Are relapses the same thing as flares?  Is there usually any warning that you're going to have one?  Sorry about all the questions, but I'm probably going to have lots.... :)

Thanks,
Rita

[AMO]

hi
i am hapy and sad for you today. You probly will alway remember the day .
i tried provigil som,etime ago. Do you know it was developed for narcolepsy?
For me it did exactly what it meant for...to keep you awake. Not more   energy just awake.
I took it scheduled and adjustmenyts, but found myseelf awake al l ours of the night for a few days. Then ii developedd horrendous stomach pains, a rare side effect.
I know other is ia a miricale . I hope it works for you.
be well , amo

[Heather3418]

FANTASTIC news about your doctor.  You found a good one.  Am sorry though, that it sounds like probable MS.  I was hoping it wasn't.

Let's hope that he can give you definite diagnosis without the LP.  Bet if the LP will resolve things in his mind, you can do it.  To get my diagnosis confirmed, I only had to have ONE LP....so at least that's some good news.

I can tell by your post that you are relieved.  If you are, then I am.....

I am so glad you found this guy.  Wish there were more like him, out in this world.  Keep us posted girl.  Promise?

Heather

[essdipity]

It's just one more acronym, standing for Disease Modifying Drug. They don't 'cure,' but statistics show they do help reduce relapses.

ess

[Cosmobirdy]

OK, I'm going to sound stupid already..... what's a DMD?

Rita

[essdipity]

What a great story! You are lucky with your doctor for sure. If you get an MS diagnosis, absolutely go for a DMD asap (to use too many acronyms by far). Please do keep posting here. You are more than welcome.

ess