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Posted 4/26/2008 9:04 PM (GMT 0)

Hi, I was just diagnosed yesterday with MS. I have a few questions and hope to get help and support here. I am 49/female. I have been having tingling and left sided weakness off and on since a year agO and times when I am so dog tired, which is not normally me, I teach aerobics 3x a week! My regular Doc has said ITS ALL IN YOUR HEAD, YOUR NORMAL. Gotta love him....or do I?

3 weeks ago,I was starting to notice very blurred vision in my left eye and the most horrible behind the eye pain you can imagine.  That took me to the Opthalmoligist thinking I just needed new glasses....well,he had me get Brain MRI and then said I needed to see a neuro Doc and be evaluated again. He said I have Optic Neuritis and another MRI was ordered for just my eyes and optic nerve, to rule oout possible optic nerve tumor. ANYWAY.....Now I am waiting. Basically because one doc thinks it MAY be MS and other Doc thinks it is.I am to know Monday what they are going to say.

I just want to know so I can start whatever treatment I need to slow the progression IF it is MS. Any advice on what I need to ask these Docs? I am not a hyprchondriac, I love being healthy and fit, but am sick of Doctors who seem to know everything and dont know anything, other than I do have optic neuritis and I do have about 5 GOOD SIZED spots of white matter that are not supposed to be there. I am sooooooo frustrated. please advise...I am VERY edgy recently too, not my usual self but I am not sleeping very well. Thanks for any help ahead of time~Kate

Posted 4/26/2008 10:57 PM (GMT 0)
Hey Kate

Wow...roller coaster huh? Welcome to the board! I'm so sorry for what u'r going thru. It can be so frustrating and the wait is so intolerable it seems. Try to hang in there and understand that the time it takes is time for the docs to be sure...which is what u want. Optic Neuritis is a fairly common precurser to MS, but not always. The five spots...lesions...are also markers for MS IF in the correct locations. This may be what's making one of u'r docs stop and think. Lesions can come from many things...even something as seemingly benign as migraines! So u'r doc needs to know where these came from and sort of 'connect the dots' on u'r medical history. Have u looked at any of the MS meds?? Maybe u could pass u'r time until Monday by doing that. Give u'rself some heads up on what's out there and what would best suite u'r lifestyle. The CRAB's as they're called (Copaxone, Rebif, Avonex and Betaseron) are the primary meds and recently readded is Tysabri, but that's typically only used after the other meds have been tried and for whatever reason aren't appropiate for a person. U may also want to spend some time (if u haven't already) going back over u'r medical history and pinpoint any unexplainable probs u've had in the past. For example, maybe a time when u had numbness for a period of time and never got an explaination for it. Things like that. U'r doc may need to know about this kind of thing just to fill in the blanks of this. Something that we try to advise new members to do is to start a symptoms journal. Just note the symptoms u'r having and their duration and how they feel to u. That will help over time when u'r trying to get a clearer pic of all that's happened.

The edgy feeling is not uncommon friend. Of course u'r going thru a lot now and add to that the sleeplessness and it's a good recipe for being edgy! Try to rest as u can and get the sleep u can get as well. Hang on friend and try to take care of u'rself as best u can now. That's the best u can do. We will be here to answer u'r questions and help u along with this. I'm so glad u'r here with us and hope u'll feel u can make u'rself at home. The people here are great!! Again, welcome to the board!
Posted 4/27/2008 12:05 AM (GMT 0)

Hey Kate,

Welcome to the board.  I am very sorry to hear that you have been diagnosed by at least one doctor with MS.  I am fairly new to this disease as well.  We have people here that are diagnosed with MS, CIS (clinically isolated symdrome), probable MS, and some that are limbo with no real answers.  All are welcome here.  You will find great support, experience and information from our members.  We also have a live chat on Mondays at 4pm pacific, 5pm mountain, 6pm central and 7pm eastern time.  All you have to do is click on the word "chat" that is on the blue bar up on the right hand side of this page. 

Please feel free to ask lots of questions and vent as you need.  I agree with Rhonda, you have every reason to be edgy.  That could actually be caused by a lesion, or it can be caused by the stress if finding out you have a chronic disease.  I hope you find great support here to help you adjust to this. 

Love and prayers,

Posted 4/27/2008 2:55 AM (GMT 0)
Welcome Katie, sorry to hear you've joined the roller coaster called MS.  My experience has been over the past 12 yrs of constant chronic symptoms that have not gone away but been dismissed for one reason or another as not serious enough or not enough dots to connect until one is really serious and scary enough to drive you to the Neuro. I have found since that moment nearly 2 yrs ago now, that doctors really don't care much for this dx so they try really hard to disprove it as much as prove it, and when they've tried everything to prove it isn't and it still turns up it is... that's when you're sure.

So not that any of this reassuring to you but hopefully you'll feel better knowing you're getting the best dx cos they're checking everything.

I found this board in March when I finally got a dx from my neuro who did just what I described to me. My GP's have missed the boat for a lotta years labeling it everything from depression to fibromyalgia to nothing. Now I know what it is, I'm like you, I want to deal with it but the one thing I've learned most here is to talk, ask, read and listen to what I've read and take it all to heart cos there's some wonderful great perspectives that have really balanced out my fears. Most of all: it's just a dx, it's not ME. :)

Looking forward to your progress and hearing from you around here!

Posted 4/27/2008 3:02 AM (GMT 0)
Katie,
I know it is a difficult time for you. But stay positive. My dx of MS came from a dx of ON. If its MS you life will still go on. There are answers and i'm happy to hear that you are ready to face it.
"I just want to know so I can start whatever treatment I need to slow the progression IF it is MS."

Keep that attitude and don't let it push you down.

We are here for you!
Dana
Posted 4/27/2008 3:36 AM (GMT 0)

Thank you all for your support. I am determined to deal with whatever happens and not let it stop me from moving forward with life. I am not very good about needles ( I have always had trouble with IV's, they have a hard time finding veins in me and poke me often to get one). I understand, so it seems, many of the meds used to treat MS are shots? Are there Oral meds that are just as good? I hate to be a pansy, but...hey...I am...lol. Just wanting to know so that when I talk to the Doctor next week and IF this is MS....I am prepared to ask about meds that can be taken orally rather than injections.

I will be sure to let you all know as soon as I know, what the Docs say . If this is MS, I will stay on this forum to become more educated for sure.  You all are TERRIFIC! I have never met so many compassionate people online before as I am new to the forum stuff,,,and well...MS. I wish you all well and God Bless ~Kate

Posted 4/27/2008 5:09 AM (GMT 0)
Kate,

I am sorry to say that there are not any oral meds yet.  Many people are just like you though and are not at all happy about self injecting.  You are not alone in this.  The drug companies know this and they all have auto-inject tools that help with this.  It is a small mechanism that you load the shot into.  Once it is in you cannot see the needle.  Then you just put it against your skin and push a button and it is all done for you.  You should know that with the exception of avonex the meds are sub q so the needle is quite short and very fine.  I have found that pain is really not an issue.  I does take some getting used to even for those that are not needle-phobes. 

All the med companies have nurses that come out and train you.  All the med companies also have nurses that you can call if you have a question.  They want you to be successful with your med so they are very helpful and supportive.

Love and prayers,

Posted 4/27/2008 6:40 PM (GMT 0)
Katie,
Sorry about the needles but as others have said, they are working on a better way of giving meds. orally. Some needles are better than others. Once you know what you are going to be on come back and let us know. It just seems "not right" to do a shot. It will just become a habit like brushing your teeth or putting on deodorant tongue someone had said that once to me and i rolled my eyes too but really you will adjust to it and it will be empowering to administer your shots yourself and feel like you have control over the MS rather than it controlling you.

You have such a great positive outlook and i think many can benefit from what you have to say during peoples "down times"

I look forward to hearing from you.
Posted 4/27/2008 11:42 PM (GMT 0)

Hi Buckeye! Thank you for your kind words. Just wondering if your an Ohio Buckeye...I am. Anyway...I dread the idea of shots but if thats how its gotta be,,then so be it, I'll live.lol

I will be talking ( hoprfully) tomorrow to the Docs to see what the plan is for me. I will certainly be posting as soon as I know. This is just a mountain have to climb, the valley is no fun, but theres always another siade to the mountain and I WILL get there...as we all will. Valleys just make us stronger, weather I have MS or not. Gotta stay positive! Hugs~Kate

Posted 4/28/2008 12:04 AM (GMT 0)
Can an optometrist pick up on MS from an eye exam or does it have to be an Opthalmoligist?
Posted 4/28/2008 12:15 AM (GMT 0)

Hiya Muzz,

I am not 100% sure, but I don't believe an optomitrist ( most likley spelled wrong,lol) can't diagnose MS. I went to an Opthalmoligist ( also spelled wrong, I am sure) because I was having vision problems..He ordered  the first MRI of my brain, when it came back with all the white matter stuff he sent me to a neurolgist, who ordered another type of MRI only on my eyes. Optomitrist are not MD's, so I don't think they can diagnose.....but...then again, I might be wrong. Just a guess here.

Hope you are doing well...sorry I can't give you a positive answer, but I am betting others can and will:)~Kate

PS....just so EVERYONE KNOWS.....I AM A HORRIBLE SPELLER! LOL, LOL IS AN EASY ONE, I LIKE THAT...LOL

Posted 4/28/2008 12:58 AM (GMT 0)
TY Katie for your reply...I spell well but I'm a lousy typist and seldom check what I've written... ;)
Posted 4/28/2008 1:55 AM (GMT 0)
From what I understand optometrists can pick up on suspicions but have to refer to the opthamologist for the orders to MRI's etc... then from there you usually end up with a Neurologist to oversee the issue.

MS is dx'd by the combination of symptoms coming together... the ON was the clincher for me... up that point I had a multitude of numbness, spasticity, pains, etc... but nothing concrete til the ON and loss of some motor control of one hand.

Good luck on the medication discussion with your doctors.
Posted 4/28/2008 1:55 AM (GMT 0)

Hey Katie and Muzz

We have another member who is much more knowledgeable on this subject, but i'll take a stab at it. As i understand it, any eye doc who can see the back of the eye...the optic nerve...can diagnose Optic Neuritis. That said, maybe not all docs will recognize it...but if they can see the optic nerve and it's pale color when ON is present, they can dx it.  Hope this helps!

Posted 4/28/2008 6:47 PM (GMT 0)
Hi everyone,

I just heard from my Doctor. He wants me to come back for yet another MRI to view even better detail of the center of my brain.  The first MRI showed several lesions...the second MRI was for the Orbital Area...now this is the 3rd one which will be this week. His office is supposed to call to schdule it.

The 2nd MRI showed significant inflammation in the middle of my brain ( his words). THEN....He wants me to see a Neuro. Doc ( This Doc I am seeing now is a Neuro-Opthalmolgist) who specializes in MS so I can begin treatment for MS. He wants to take care of this eye thing first though. I am being treated by Docs at the Cleveland Clinic. Anyone else going there. The Neuro Doc I will be seeing is a Dr. Cohen.

Hope your all well...keep those chinny-chin-chins UP...we will get through this..one day at a time! Blessings and Hugs~Kate

Posted 4/28/2008 7:15 PM (GMT 0)

Muzz said...
Can an optometrist pick up on MS from an eye exam or does it have to be an Opthalmoligist?

An optometrist may note some changes in the optic nerve, but he then needs to send you to a neurologist or an opthamologist (not necessarily a neuro-opthamologist, but if that's the referral, that's good)

for further testing and/or diagnosis.

Changes might including a swelling of the optic nerve, or the optic nerve in one eye is more pale than the optic nerve in the other eye (or a host of other problems - -but these two are generally indicative of possible MS).

Any doctor, really, who examines your eyes can see if the optic nerve is "different" in one eye than in the other..and if so, it depends on their expertise, and their knowledge of you as patient (and other signs and symptoms you might have), whether they feel comfortable diagnosing MS or not.

An optometrist is not an MD, though .. think of him as more a "pharmacist" -- he may be able to tell you what is wrong, but he'd have to tell you to go to an MD for a follow-up examination, and then possible treatment.

Posted 4/28/2008 7:17 PM (GMT 0)
Katie, I've not gone to the Cleveland Clinic, but from all I've read, you're under very good care there. I hope all this gets sorted out for you soon, and you get started on good treatment. Take care.
Posted 4/30/2008 1:28 AM (GMT 0)
TY guys for the info :-)
Posted 4/30/2008 1:41 PM (GMT 0)

Hi,

I was just called and the 3rd MRI is to be this Friday at 3pm. On this 3rd MRI he wants to look closer at the area in center of my brain where theres swelling and pituitory area closer, so I've been told by the fellow who set it up, one of the Docs assistants. He said they also want to compare it to the first brain MRI I had on the 21st.

Is it possible some of the lesions may have gone away?

I wanted to ask and see if any of you with OP, before starting treatment for it ever had days of no pain. I hardly had any pain the day before yesterday up till last night and it started again. This morning, just a dull headache. I got very sick to my stomach yesterday and had dry heaves and today stomcah is still queezy. Just curious. Thanks and hugs~Kate

Posted 4/30/2008 2:56 PM (GMT 0)
Hi Katie 7, Im new to this sit today. Sorry to hear of your troubles.  I am 59 and was diag, about 12 years ago.I was told by my then doctor that i was getting old and had to live with the pain and aches. so i went to the library and checked out all my problems in med.books and got a new doctor and told him my thoughts. so he sent me to a specialist & within 6 months I had a Full Body MRI and guess what I was right. I was diag with primary progressive MS. yeah Darlene
Posted 4/30/2008 3:32 PM (GMT 0)

Katie7 said...

Hi,

I was just called and the 3rd MRI is to be this Friday at 3pm. On this 3rd MRI he wants to look closer at the area in center of my brain where theres swelling and pituitory area closer, so I've been told by the fellow who set it up, one of the Docs assistants. He said they also want to compare it to the first brain MRI I had on the 21st.

Is it possible some of the lesions may have gone away?

I wanted to ask and see if any of you with OP, before starting treatment for it ever had days of no pain. I hardly had any pain the day before yesterday up till last night and it started again. This morning, just a dull headache. I got very sick to my stomach yesterday and had dry heaves and today stomcah is still queezy. Just curious. Thanks and hugs~Kate


Hi, Katie,

Yes, sometimes lesions can "go away" -- heal -- disappear -- on an MRI.  And MRI's aren't perfect. By that I mean, sometimes lesions will appear on one MRI and not another. So it might be that lesions will appear to have "gone away"..but they're there.

It's good that he's doing a follow-up, and it sounds like he wants to carefully check the pituitary gland, too -- which can also cause problems that can mimic MS.  It sounds like you're in good hands with your doctor!

As for "OP" -- I'm assuming you meant "ON", or optic neuritis?  I have had that twice in the past, without any pain...so I'm guessing (and this is ONLY a guess!)..that you could experience it without pain as well....

I hope you get some answers soon!

Posted 5/1/2008 3:48 AM (GMT 0)
Hey Katie,

I'm kinda in your boat with the pain part and the ON... but the ON isn't the cause of my pain. It seems my pituitary has a suspicious area on it that's inconclusive to be a tumor but was deemed enough to possibly be the source of the major migraines I was having daily. My neuro put me on Topamax for that and the migraines (nasty ones)  have been reduced to 2-4 a month or so... huge blessing over the daily crud before. That was a year and a half ago.

In March, I showed up with ON... at least it showed up when he was seeing me and it was causing me enough problems night driving for me to mention something that made him look deeper and declare it which finally confirmed his suspicions of MS. Now it's periodic... but there's not severe pain, just a swollen sensation, the pupil is usually larger than it should be and vision is blurry or dimmer (doesn't receive light right)... also motions or sensations of motion in the periphery range...

On top of all that I have not shown a lesion yet ... I'm waiting yet to hear what my last results are for my MRI's but so far I don't think much has shown up in the brain...

Like uppity said, your doctor's on the right track to pursue the pituitary. It can be a major bugger and being the master gland it affects everything in our body (thus the mimicking MS). Hoping you get answers soon.

Posted 5/2/2008 5:40 AM (GMT 0)

Hi Kate,

Just wanted to post a belated welcome. I hope your MRI goes well tomorrow, and that this will allow your docs to give you some concrete answers. Like Uppity, I have heard really good things about the Cleveland Clinic, and it sounds like your docs are being really thorough. Please let us know how things go for you.

 

Sunny

Posted 5/4/2008 1:34 AM (GMT 0)
I'm new here too. Just wanted to say welcome and I will be thinking of you and praying for you. All of this MS stuff can be overwhelming, but this site is a blessing and everyone here helps to keep things in perspective. Take care!

Kathy
Posted 5/19/2008 7:00 PM (GMT 0)
 you might want to research low dose naltrexone. could help with energy

 

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